>Holland, Italy, Beirut…..and A Transit Stop

Posted on February 11, 2011 by Admin

The girls love the Chinese New Year Decoration

We are all familiar with Welcome to Holland, a beautifully written piece by Emily Perl Kingsley. A must read for every newly diagnosed family, read it here at http://www.child-autism-parent-cafe.com/welcome-to-holland.html

You may have even read my piece, though not written in beautiful poetic prose as Emily, however I too have been touched and inspired by her writing. Read it here at
http://mayaviktoria.blogspot.com/2010/11/farewell-holland-ciao-italy.html

I recently came across a remarkable piece written by Susan F. Rzucidlo. As you know, I love war analogies and yes, most times Autism does not feel like Holland where it’s calm, lonely, boring, full of windmills and clog wearing cyclists. But with a then pre-verbal, anxiety-ridden, screaming, hyper, aggressive and self-abusive child, most times in our household, Autism feels like downtown Beirut. Though the pilot says you’ve detoured and landed in Holland instead, but he was mistaken, we landed in Beirut instead. Please read it here at http://www.bbbautism.com/beginners_beirut.htm

Yes, the Bagshaw family no longer live in Holland or Beirut, we are in that halfway house on route to Italy. For even though Maya is essentially considered recovered, she is still in the recovery period. Too many illicit croissants, ice creams and missed supplements for a prolonged time and we’re on the boat back to Beirut. However, Mum & Dad are now astute enough to make sure the boat never lands onto the shores of the war torn country. Yes, Beirut really does have beautiful beaches, but we’d rather swim in the shores of Capri. We see the signs and notice that we’re on the wrong path. So we do a monumental u-turn and we’re back in the calm warm waters on the way to beautiful Italy again. But hang on, Italy is a long way away, you need a visa, you need to learn the language and we all need a transit stop.

Where’s my Ang Pow?

For a child formerly diagnosed with Autism, Maya is still in the Recovery stages. To many who observe her, she is Recovered from Autism, within the Non-Autistic range, a typical child or however you name it. However, at home we scrutinize her every move and sit up and take notice whenever she does something odd. She kept licking us recently, and Paul freaks out and think “oh my God, it’s Autistic behavior!” and I freak out and think “have we missed her zinc supplements?”. But when we ask her why she’s licking, Maya replies “Because I’m pretending to be a baby kitten!” and off she goes crawling and meowing……

So where is the half-way house for Managed Recovery or Recovering Autistics? For us, it’s Kuala Lumpur, Malaysia. Just as an alcohol addict undergoes a rehab program, he is not considered recovered just yet, he is in the recovery process. Many fell off the wagon. Even for cancer survivors, you battled cancer and survived. For the lucky ones, you can recover, not cured, but recover. The term ‘in remission’ I believe. However the fear of a relapse or another tumor coming back again is very real and very scary indeed. Just as in Autism, a newly recovered child is still in the early recovery phases. We don’t believe she will regress fully back into Autism, but we fear that certain behavior characteristics may come back and decide to stay for life. Sometimes, our fears and overactive imagination takes us back to Holland or Beirut, but nowadays, it’s mostly Maya pretending to be a kitten, loving to be cuddled and played with by Mama & Papa Cat, and chasing after her sister kitten.

Celebrate every festival in Malaysia

We are no longer in Holland or Beirut, Italy is within reach. But for now we are comfortable to say that we’re recuperating and enjoying the warmth and hospitality in Malaysia before Maya is ready to retire gracefully in Italy. Malaysia is full of colourful festivals, exotic beaches, million year old rain forests and fabulous shopping malls amidst the humidity, mosquitos, potholes and corruption, but I’d rather be here than in Holland. Wherever you may be, always remember that Malaysia and even Italy is always within reach. How long your journey takes, we don’t know. But know that the friends you have made in Holland and Beirut are there to hold your hand. Happy Chinese New Year and Gong Xi Fa Chai to all my friends wherever you may be. May the Year of the Golden Rabbit be a calm and peaceful year to you…..

>Mitochondria, Homeopathy and 15kg….

Posted on February 9, 2011 by Admin

>Maya has been struggling with low weight gain for a long time. In 2009, Maya gained only 1kg the entire year topping up to 13.5kg. In 2010 she hovered around the 14kg – 14.5kg mark for the past 1 year. When Maya turned 5 years old in October 2010, she was 14.2kg. With all her hard work, Maya has lost her Autism diagnosis, her behavior and development skills and age appropriate and she is thriving well at school and socially, However, she is still a picky eater, and even when we manage to feed her adequate meals, she struggles to put on weight. Frequent illness would cause her to lose weight again and again.

Daddy’s Birthday, guess his age…

Maya recently gained weight, she got to 15kg within 1 month! It coincided with our 3 week holiday back in Sydney in December. I weighed her at 14.2kg in early December, when we came back to Kuala Lumpur, she weighed 15kg on New Year’s Eve. It also coincided after I consulted Dr Jeff Bradstreet in November and Dr Michael Beilby in December.

At that time, our main concerns were both girls’ frequent illness, low weight gain and Maya’s fatigue and low muscle tone. We wanted to concentrate on mitochondrial dysfunction, immune dysregulation and revise our chelation protocol.

We consulted with Dr Bradstreet at TRIA, Piyavate Hospital in Bangkok. During Maya’s consult, we concentrated on increasing her cysteine levels by reintroducing N-Acetyl -Cysteine (NAC). as you know, NAC is a precursor to glutathione, the body’s main detox component. Dr Bradstreet emphasized that whilst on chelation, we must always supplement cysteine with NAC. Chelation robs the body of cysteine as well as stripping away minerals. Therefor, his chelation protocol must always include NAC. We discussed his preferences for different brands of NAC, after using Kirkman’s NAC for so long, we will now be changing to Integrative Therapeutics as soon as my eagerly awaited order comes in.

We also concentrated on Mitochondrial supplements such as CoQ10 and Acetyl-L-Carnitine. We have done all these 3 supplement before at different times for differing protocols, but we had to prioritize other treatments so we had to stop these 3 supplements for a while. There were also other recommendations which we are slowly implementing as well as new mitochondrial testing. He also fine-tuned our existing protocol and helped us move forward in our quest to improve both girls’ mitochondrial dysfunction. Low muscle tone and hypotonia has been associated with mitochondrial disorder (not mitochondrial disease). For these children, zinc, CoQ10 and Acetyl-L-Carnitine would benefit them.

We also inquired whether we should start HBOT (Hyperbaric Oxygen Therapy) but Dr Bradstreet concluded that both girls are doing so well now that the benefits of HBOT on them would be minimal. He went on to explain how HBOT would benefit other kids with other issues. We discussed Maya’s food aversion and her picky eating. We also looked back on her regression on most amino acids. Dr Bradstreet concluded that food aversion may be related to heavy metals, and the regression on amino acids is a sign that she can’t metabolize meat well. The girls naturally eat small amounts of protein anyway, so for the moment we are happy to know that we don’t need to agonize about feeding them more protein. That whatever meat, chicken or fish they are willing to eat is sufficient.

We consulted Dr Beilby in Sydney, with a combination of Biofeedback and Homeopathy, he concentrated on certain toxins, bacteria, parasites and mold. He addressed Maya’s adrenal glands and pancreas as well as identified what medications or supplements were immune-suppressants for Maya. His homeopathic remedies helped to detoxify and address certain issues. We saw some nice gains in Maya and decided to consult with him for Yasmin too. Whenever I start a new treatment or supplement, I always make sure I try it out too. I would not let my girls try something if I myself couldn’t tolerate it too. Both Paul and I were so impressed with homeopathy that we both had a consult individually with Dr Beilby.

Daddy need help to blow out the candles

Both girls were on the homeopathic remedies for several weeks, during which time we saw good appetite, improved bowel movements, improved health, good behavior and improvements in lots of new social skills in both girls. Maya was extremely sociable, her manners and behavior were exemplary to the point that our Aussie friends commented on how well behaved our children are! That was definitely a first. Yasmin in particular did extremely well on homeopathy, her behavior, social skills and verbal communication improved tremendously. Coming back to Kuala Lumpur, after the first week of school started, her teachers commented on her increased vocabulary, how she is now more outgoing and sociable at school, even helping other kids in class.

After 4 weeks on homeopathic remedies, both girls had constipation, Yasmin worse than Maya. Both girls had light colored stools, almost beige and clay like. Maya also had some blood streaks in her stool on 2 occassions. We saw some slight regression in behavior and compliance.We immediately sent an email to Dr Beilby and he recommended us to stop the homeopathics immediately. Both girls’ stools turned to it’s normal color within 3 days, Maya is no longer constipated though Yasmin’s motility issues are back again. Dr Beilby also suggested that at some point, we can resume the homeopathics again when the girls have recovered.

The only other time my girls had beige clay like stools was after drinking Vance DariFree milk for 2 months. That was 2 years ago. 3 days after we stopped the potato milk, their stools went back to normal.

We also had the chance to consult Dr Rina from Indonesia recently. She is helping us with Dr Bradstreet’s protocol and with the urine Neopterin test from Phillipe Auguste Laboratoire and some blood work with our local labs. When we discussed the girls beige stools after 3 weeks of homeopathy and the previous experience with the potato milk, Dr Rina came to conclude that it was related to bile production, biotin and magnesium and an explanation of the biochemistry involved. Needless to say, I had a blank look on my face, most of her explanation went way over my head. But it emphasized to me the importance of biotin and magnesium for both my girls. And to remind myself that homeopathic remedies that detoxify can also strip away minerals. I also then remembered that both girls started grinding their teeth at night a few weeks ago, when we increased their calcium intake, it stopped.

So, for those who are on homeopathy, don’t forget the heavy metals detox principle- if it detoxes heavy metals (whether it’s DMSA, EDTA, natural chelators like Zeolite or homeopathic remedies specifically to detox) it also strips away minerals. So remember to increase your minerals whenever doing heavy metal detox or chelation.

Maya’s turn to blow out the other candle

Dr Rina is pleased with Maya’s progress, before we start chelation she would like to both girls healthy at least for the next 1 month, to maintain their health and if possible for Maya to gain another Kg before we will proceed. I am happy with this slower method, safety is always and foremost in my mind. If my girls are not ready for chelation, that’s fine, there are many other things we need to implement in order to prepare them.

It was Paul’s birthday recently, Maya decided Daddy deserved a home-made cake, so each girl made a cake each with a candle on top. They banned Paul and I from the kitchen, together with the nanny, they made the cake and decorated it. We had a little party at home and they surprised us with the lovely cakes. Paul is a proud daddy indeed, the girls love him deeply and they show their love every day.

Maya is now back down to 14.7kg. Hopefully Maya will hit the 15kg mark again. We are starting the homeopathic remedies again and introducing the other supplements in slowly. Both girls have started school again after the long Chinese New Year Break and are doing well. We are feeding her lots of small meals and hopefully she can gain a bit more weight. We see more of Maya’s true character emerging, she is affectionate and loving. She is getting much better at drawing and her reading skills are flawless. Most importantly, she has many friends and loves her little sister very much. Recently we bought a toy Doctor’s kit, the girls run around pretending to be doctor and nurse and treating imaginary patients. Most times, Daddy is the patient, it’s funny to see them using the stethoscope, checking temperatures, putting on bandages on their father. Their expression and manners mimic every doctor they have seen. Both girls can’t decide whether they want to be doctors or nurses. I just want them to be healthy and happy, I believe both girls can achieve anything they set their mind to. She’s already come this far in so short a time, who knows how far she can soar……..

>MB12 and Pavlova…..

Posted on January 18, 2011 by Admin

Bubushka teaching the girls how to make Pavlova

Methyl B12 is definitely one of my most favorite treatments for Autism. You can read about our experience with MB12 here. However, that was written in 2009, since then our experience with MB12 has evolved.

There are many forms of B12 therapy to choose from, different types of B12 can come in oral capsules, nasal sprays, patch and even lollipops. In biomedical treatments, we use the methylated form of B12, also known as methylcobalamin ie. methyl B12 or more commonly known as MB12. Choosing MB12 injection over the other forms were easy for me and my husband. We had learnt enough to know that MB12 shots is our choice for Mei. We couldn’t wait to start MB12.

How you choose to do B12 therapy is based on your child’s unique medical issues as well as other personal reasons. Please discuss with your Biomed doctor and read up more on MB12 therapy. Whether you choose to purchase it in vials, pre-filled syringe, oral, patch, nasal spray or lollipops, please make sure you’re choosing it for the right reasons rather than because your doctor or supplier only carries a certain type thus discouraging you from trying another form because they may not have stock of it and is more concerned about loss of revenue rather than what is best for your child. Take note that MB12 injections are prescription only treatments and can only be ordered by a medical doctor from specialist compounding pharmacies. Discuss with your doctor about the different types of MB12 shots, whether it includes preservatives or not. Some children cannot tolerate the preservatives in MB12, check with your doctor whether he can order preservative-free ones. My girls have no issues with the preservatives though some kids are quite sensitive to it. You may even discuss with your doctor if it’s possible to order MB12 compounded with folinic acid which some parents are already doing. I have not tried this new cocktail (yet!) so I can’t comment on it’s benefits.

Previously, I have never held a needle syringe in my life, and now I’m expected to inject my baby with it? And I have to do it every 3 days? Ironically, I was the one who was begging my doctor a few weeks later to increase the dosage, then to increase the frequency.

Fear of giving injections – many parents when first starting Biomed and hearing about MB12 have strong feelings against giving the shots. Yes, it is extremely nerve-wrecking the first time I had to do the shot. Hubby was holding on to Mei who was screaming and struggling mightily. He thought he had the harder job, whereas I thought he had the easier job.

It took a lot of practicing injecting on an orange before I did it on Mei. We tried on apples and even bananas, but found oranges were more ‘realistic’. We’ve even accidentally injected each other. Mei squirmed so much and never kept still. It was a terrible experience, she screamed on and on and it took us half an hour to calm her down afterwards. The first few shots were awful, but after that it got easier and easier. We found more effective ways to keep her still and the fastest ways to console her. We realize the thought of the injections was scarier to Mei rather than the pain of the injection itself. Mostly because of how we held her in a vice grip, and she could sense our own fears and nervousness.

Mei following Bubushka’s instruction carefully

When done well, the pain would sting like an ant bite and would go away in one minute. We’ve been doing it for nearly 2 years now and we do it every 2 days. Now I just calmly tell her it’s time for her injection, she’ll whine and protest but she will comply. Most times, Mei will bend over for me against the sofa, she will complain and fidget at times, she’ll tell me it hurts but she’ll forget about it a minute later. She hates the cold surgical swab just as much as the injection. When I run out of our preferred needles, it’ll hurt a little bit more. We are more adept at doing it though at times we still botch it up. At times there’s a red mark or a tiny dark bruise afterwards if we injected too deep. Paul and I take turns to give her the injection, both of us have our preferred methods.

We are told to do a shallow subcutaneous injection at 30 degree angle or less into the upper outer quadrant of the buttocks. Say what?? Now, it’s easy as pie. Holding the syringe with my thumb and middle finger, then using my 2nd finger to push the plunger gave me the best control and allows me to do a shallow angle. Many of us have the opportunity to have our doctor to show us how to do the first shot on our child. For some, this may not be possible especially for many of us who consult with overseas doctors and are not able to bring our children to the doctor frequently.

You can find many uTube videos on how to give Mb12 injections, from doctors giving you full length explanation to parent’s videos of how they administer the shot to their child. If you are new to MB12, remember that practice makes perfect. Some parents take their children to their local doctor regularly to have the shot administered. Personally, the time and hassle of loading up the kids, get them in the car and drag them kicking and screaming to the Doctor’s clinic because they know they’re gonna get an injection is too much of a hassle. Personally, I’d rather inject them myself at home. However, this is a personal choice, ultimately it really doesn’t matter who administers the shot, as long as it is done well and consistently. In certain Asian countries, you can only do MB12 injections at the hospital or clinic, local health regulations do not allow parents to do it themselves.

Previously, MB12 was hard to obtain in Malaysia, we had to go specially to Singapore or via our other biomed doctors to get it. But now you can order MB12 shots with our Malaysian biomed doctors, please contact them directly if you do not have a biomed doctor already and are interested in trying MB12.

Some parents are very opposed to doing injections because of the needle and pain factor, but I look at it this way – if my child was diagnosed with diabetes and required frequent insulin injections, the same thing applies. It is something that as a parent I have to overcome my fears for the sake of my child. The first couple of months is hard, but soon you’ll be injecting like a pro. Pretty soon your new Biomed friends will be begging YOU to do the injection for their child:-) Nonetheless, whether you choose MB12 shots is a personal choice depending on many factors. The ability to do the injections, our own fears, the horrific struggling by our children, parents who travel often and cannot or should not entrust the caregiver with administering shots and many other factors to consider. You will find which forms of B12 is best for your child.

The finished Pavlova – contains eggs and cream

Many children’s Organic Acid Test (OATs) result usually show high levels of B12. A frequent question is why do we still need to do Mb12 shots when the B12 levels are so high? Many Biomed books and web articles will give you a detailed scientific explanation, however this is mine in layman’s Mummy’s terms-

From my understanding, many kids have high levels of B12 in the OATs, but the issue in some kids in Autism is that they are not able to convert it into the methylated form. That is why we still have to give MB12 shots, because it is the methylated form of B12, not plain B12. All the B12 derived from food sources in our children are not being converted and utilized properly, just going round and round but it’s not really doing the job it should be doing. It’s a biochemistry issue that many of our kids have. MB12 in Autism is a methyl donor, an important component in the methylation cycle.

So yes I would do the MB12 shots regardless of the high levels reported in the OATs, especially if you see improvement. Even if you don’t notice obvious improvements, take note if there is regression when you stop. Always remember, test results are only a guideline. However it is the improvements or regressions that you observe that is the true measure of whether a treatment is effective or not.

Some parents find MB12 injections show no improvements or changes in their child even after a few months, these children are usually referred to as non-responders. In my limited experience, it usually came down to a few reasons;
1. Dosage- perhaps the dosage is too low? Discuss with your Biomed doctor on this. One of the beauties of using vials is that you have the flexibility to change the dosage. I recommend consulting with a doctor before you increase the dosage yourself.
2. Timing- many parents choose to do the injection at night when the child is sleeping, thus making the injection easier. In my opinion, the main benefits would have worn out by the morning. I prefer to inject in the morning, this way I can observe the benefits immediately.
3. Oxidative stress- some children are non-responders to MB12. It is now believed that it is due to high oxidative stress for some children. For these kids, perhaps it’s best to stop MB12 for a while and concentrate on lowering the oxidative stress first. Perhaps later on, MB12 will show significant benefits. Please discuss this with your doctor.

So in some kids, the MB12 will not give you the WOW! results we hear about. Until you lower the oxidative stress, the improvements on MB12 will be limited. Just because for now Mb12 doesn’t give you the amazing results you hope for, doesn’t mean it may not happen when you reintroduce it at a later date, when the body is prepared and ready for it. Mei had very high oxidative stress initially, we worked on it for a few months before we introduced MB12 and we saw immediate improvements.

We did MB12 injections on Min Min too, however unlike her sister, Min Min was a non-responder. We tried different protocols, worked on her super high oxidative stress levels and her other issues and reintroduced MB12 again several times. We did not observe any positive improvements nor any regressions, so eventually we decided to stop and conclude that MB12 is not an important part of her treatment.

“Protocol matters!” – Dr Neubrander, World Autism Congress Hong Kong, May 2010.

We all started on Dr Neubrander’s dosage and protocol of every 3 days. However, remember that it is always child specific. So, if you start to notice that the benefits or effects or MB12 wears off on the 3rd day, discuss with your doctor about increasing the frequency to every 2 days. With the help of my doctor, I have tried different dosages and frequencies and finally found the optimum protocol that suits my child best. I am blessed with doctors who are open to different protocols and dosage, fully embracing the first thing they learn at biomedical conferences- that there is no one size fits all.

Some side effects may be expected –

Pink Urine – we are all familiar with the pink urine. This is usually the first urine after the shot. If the urine is still pink even after several wee wees in the day, then the dosage may be too high, please consult with your doctor. What if there’s no pink urine? Err….. Ask your doctor:-) In my highly unscientific opinion, either the child is absorbing all the Mb12 well or possibly the dosage is too low. However, the pink urine is not an indication of optimum dosage. Behavioral, cognitive or speech improvements is your guidelines.

You may notice increased hyper activity in some children. Folinic acid will usually help with hyperness on MB12. Some children experience increased mouthing, this is also a common side-effect. MB12 increases sensations and awareness in the mouth and lips. Most parents reports that the side effects will last 6-8 weeks. However, again discuss with your doctor as to the cause of the behaviors or any issues you are concerned about.

I’m hearing more and more parents are doing MB12 shots for themselves, though it’s mostly the husbands doing so. Yes, at times I give Hubby an injection when he feels he needs a boost. He has more energy, feels clear-headed, his mind is sharper, his problem-solving skills are faster and has better concentration. Other fathers report that they feel happier, work seems easier, less stressed and is in a good mood. I know of husbands who request for an MB12 shot from their wives when they have a super-stressful day at work to look forward to. You’ll find that many Daddies are also our guinea pigs when trying out a new syringe. They give us the thumbs up on which needles are good. And give valuable feedback on certain needles which hurts like hell. Thank you to the Warrior Dads who give it up for science:-)

Though MB12 when administered by injections are considered to be the most effective based on parents’ and researchers’ feedback, please remember that one size does not fit all. If you are currently doing oral or patches and you are happy with the progress, then I say go for it. However if you have the chance to try MB12 injections, it’s always good to see if it may or may not improve your child’s condition. We have been doing MB12 shots on Maya for nearly 2 years now. Though we no longer notice much improvement anymore, whenever we miss the shots for up to 1 week, we start to notice some slight regression, mostly in fine motor skills. For now, we are happy to continue with MB12 du
ring this phase of managed recovery.

These photos were taken when we were on holiday in Australia, we never missed giving a shot even when travelling. In case you were wondering, the photos have nothing to do with MB12 directly. The girls’ great-grandmother Bubushka (means grandma in Russian) is teaching the girls how to make a traditional Aussie dessert – Pavlova, a mouth-watering concoction made with egg-white meringue, cream, sugar and summer berries. A couple of years ago, the thought of Mei learning how to do this under the supervision of her Russian great-grandmother wouldn’t have been possible. But thanks to MB12 as part of our biomedical treatment, we now have these wonderful moments to capture and memories to cherish.

>Informed Consent & Safer Vaccinations….

Posted on January 10, 2011 by Admin

Carols by Candlelight, may 2011 be brighter

When both my girls were born, I followed all the advice given by my pediatrician and the baby books I had devoured on good parenting. Rain or shine, in sickness or in health, I made sure they got their shots on time. I followed the Australian and Malaysian vaccination schedule, believing that this ensured my children from contracting preventable diseases in Asia as well as in the western world. I also wanted to play my part in public health and herd-immunity.

My eldest daughter Maya received all her vaccinations from birth; I remember the Vitamin K jab on the sole of her foot when she was barely 5 minutes old. The Hep B jab when she was 3 days old whilst we were still in the prestigious Sydney hospital. And the booster shot 3 weeks later. I would go in to see the pediatrician when Maya was still on a yet another course of antibiotics or with another round of horrible rashes, yet I still held her down to receive yet another vaccination that we were assured would prevent her from getting anymore illnesses. Some we got in Malaysia and some in Australia. I kept meticulous records of each vaccination, I obtained the name and batch number of each vaccine given and got the doctor’s signature and date.

The BCG shot is part of the Malaysian vaccination schedule, not in Australia. We all live with the BCG shots which were notorious for scarring many Asian women with it’s tell tale raised keloid scars on our left shoulders, so I opted to have it done on her little bottom instead. At that time, my biggest worry was for Maya to have an unsightly scar on her shoulder when all the other Australian kids didn’t have any, fearing the scar would brand her as different. Yes, that was our biggest worries then.

At the same time, she received her MMR shots. Maya was also recovering from the flu at that time, she was on Panadol and flu medication. I signed the consent form without bothering to read it, thinking that I knew all I needed from the baby books which never mentioned the side effects or risks from vaccination. My ignorance of safe vaccination was apparent, I relied wholly on one source of information.

The multiple load of viruses and heavy metals on a tiny human being who was ill, with a lowered immunity from fighting off the flu virus, could not withstand the multiple new viruses and toxic heavy metals. The Panadol we administered beforehand to spare her the pain of the jabs, what a load of crock! The shots were painful, no matter how much Panadol you give, especially the BCG shot. Not only that, Panadol (paracetamol) also lowers our glutathione levels dramatically. Glutathione being the mother load of our methylation pathways and detox system, is crucial. So administering a vaccine when severely depleted of glutathione leaves the body with virtually no defense against the assault.

From birth, Maya developed normally and hit all her developmental milestones on time. She said her first word when she was 9 months old, by the time she was 1.5 years old she had a large vocabulary of at least 200 words. She could count from 1 to 20 and could recite the alphabet from A to Z, even backwards. She walked on the day she turned 12 months old. She was engaging, sociable and we have many videos to validate this. Her future was bright.

Health wise, Maya had lots of rashes intermittently, prone to colds and flu and have been on several rounds of antibiotics by then. She used to have terrible colic, reflux and would cry for hours at night as a baby. How no doctor ever even considered that this was partly related to an intolerance to dairy and wheat makes me question their commitment. We were never told to give Probiotics after every round of antibiotics. Though never did it even crossed my mind that vaccines would play a part until years later.

When Maya was 1.5 years old, she received what was to be her last and final vaccination. The Meningococcal C is part of the Australian vaccination schedule, it is not available in Malaysia. We were living in Sydney at that time, I had just given birth to Yasmin so Paul took Maya to the local health center for her shot.

Climbing trees and lovin’ it!

We came back to Kuala Lumpur shortly after that and Maya slowly regressed after the Meningococcal C vaccine. She became withdrawn, lost many of her skills, she spoke less and less. She never progressed to constructing sentences even when her peers were already speaking well. She started having outrageous tantrums, meltdowns and horrible mood swings. However we assumed it was due to having to adjust to having a new baby sister who took up all our time and attention. Even through the haze of my post-partum blues, I was still concerned by Maya’s behavior and chronic constipation. When we brought it up to our pediatrician, we were assured that this is temporary and merely a behavioral tactic to get our attention. Yes, the doctor even blamed the constipation on it. I mean, seriously? I must have been completely naive to fall for that line.

Maya did not acquire any new skills for the next 1 year, she missed many developmental milestones and her behavior was more and more uncontrollable. Maya developed repetitive stimulatory behaviors such as staring out of the corners of her eyes, walking on tip toes, spinning in circles, she very rarely made eye contact, she was licking and mouthing objects constantly. She didn’t know how to play with toys, crowded places, certain noises and flashing lights were unbearable to her. Predominantly, she developed severe echolalia, where she would repeat certain words and sentences out of context again and again and again. She had no effective means of verbal or pre-verbal communication, except for screaming and crying. She would wake up in the middle of the night, either crying inconsolable or giggling inappropriately by herself for 2-3 hours.

I started researching on all possible causes of Maya’s regression. The word Autism popped up as well as many other behavioral diagnosis. Yet, Autism struck a chord in me and I researched more into it. I questioned many pediatricians, even asking outright if Maya has Autism. Many doctors said no, some even laughed condescendingly at me saying that I surfed the internet too often. Most doctors dismissed Autism because Maya did not flap her hands, because she still could say some words though out of context and she made very fleeting eye contact. Surely they should know that Autism is a spectrum, hand-flapping and total lack of speech is not the predominant diagnostic criteria for Autism.

When I replied that if it’s not Autism, what was it then? They didn’t have any answer for me. Dissatisfied by their response, I kept going until I found not 1, but 3 Malaysian doctors and professionals who finally diagnosed and confirmed Maya has Autism Spectrum Disorder in June 2008. Maya was 2y8m then, her future seemed bleak indeed.

Fast forward 2 years later, with a combination of intensive biomedical treatments according to the Defeat Autism Now! Protocol and Applied Behavioral Therapy, Maya officially lost her diagnosis of Autism. As of June 2010, Maya is now recovered. To read more on Maya’s recovery, please read my blog www.mayaviktoria.blogpost.com Maya is now 5y3m, attending a mainstream kindergarten, she is no different from her other neuro-typical peers. Her future is bright again.

Maya was diagnosed with Autism when her little sister Yasmin was 1y3m. By that time, I had already read many accounts of the Autism and vaccinations link. Yasmin received all her vaccinations beforehand however, I stopped vaccinating her just before she received her MMR even though our pediatrician were pressuring us to give Yasmin the MMR jab. Even though at that time I had raised the possibility of Maya having Autism as well as vaccinations being one of the causative factors. Not only did he scoff at the idea of Maya having Autism, he adamantly stated that vaccinations are completely safe. If I had given Yasmin more vaccinations, she would have fully developed into Autism too.

Prior to vaccinating our children, every parent should read the accompanying literature closely before we sign the consent form. In many countries, doctors can only administer vaccinations upon a signed consent from the parent. Though how well it is practiced in Malaysia and other Asian countries, I am not sure. Read the list of ingredients whether it contains thimerosal (mercury being the 2nd most toxic element in the world), aluminum and other ingredients. Never vaccinate when your child is sick, has a fever, just recently recovered from an illness, is on antibiotics or certain other medications. It is not recommended to give Panadol (Paracetamol) also marketed as Tylenol (Acetaminophen) in the USA prior or after a vaccination, remember the importance of Glutathione.

It is claimed that thimerosal has been taken out of the controversial MMR shot, however this mostly applies to developed nations such as the USA, Australia and the UK. Maya rceived her MMR in Malaysia. Many believe that old stocks of the thimerosal-containing vaccines have been shipped instead to developing countries such as in Asia. It is said that even several years after the manufacturers have pulled these vaccines off the shelves in America, the children in Asia and other developing nations are still the recipient of these rejected vaccines. Consider delaying the MMR until your child has hit certain milestones such as cognition, speech, walking and other developmental skills. In certain countries, you can request for single shots rather than the combined 3 in 1. Mercury-free vaccines are available in certain countries. It is my hope that soon it will be widely available in Asia too.

Take note that the flu shots and the H1N1 shots still contains thimerosal. My 2nd daughter regressed after contracting the Rotavirus infection and was hospitalized for 3 days. But a friend’s son regressed after receiving the Rotavirus vaccination. Another friend’s son received the Rotavirus vaccine, but was still severely infected with the virus months later and ended up hospitalized for 2 weeks. So, 3 different children, 3 unique outcomes. As a parent, how to choose whether to run the risk of infection or the risk of the vaccination? The quintessential Catch-22 situation….

Consider if vaccinating against Hepatitis B is indeed necessary, it is commonly transmitted through sexual contact or contaminated syringes and needles amongst drug addicts usually. Most children already acquire immunity from their mothers. This can be tested, check with your doctor prior to vaccination. Consider your lifestyle and the environment your child lives in and whether you think the risk of the supposed virus or infection far outweighs the risk of the vaccination. If your child develops symptoms, illness or seizures so
on after vaccination, please consult a doctor immediately.

For expectant mothers, do not vaccinate yourself when you are pregnant. If you have dental amalgams (which is partly mercury) please have them removed safely prior to pregnancy. It is not recommended to do this whilst pregnant as you run the risk of reabsorbing the mercury into your body and your unborn baby during the process.

It goes without saying, that I did not do any of these supposedly sage advice. I jabbed without question, without research nor hesitation. But we now live in an era where Autism is 1 in 99 as per quoted by the Autism Research Institute. The rules have changed in parenting, so keep up with the times everyone. We have been blessed with Recovery for Maya, Autism was a long and dark tunnel, with no light in sight. It took us many months and years, I hope that you too will find a way out of that tunnel.

Coming out of the tunnel smiling

For more information on vaccination and Autism, please refer to my favorite sites; www.ageofautism.com , www.talkaboutcuringautism.org, www.autism.com. Just google vaccine damage and you’ll see the many parents and patients account, articles and news on not just the MMR, but also the for flu, H1N1 and cervical cancer vaccinations. Books such as Dr Kenneth Bock’s 4A Disorders: Autism, ADHD, Asthma and Allergies, Age of Autism: Mercury, A Man Made Epidemic, all 3 of Jenny McCarthy’s Autism books and even Dr Sears’ Autism Book explains it better than this ever mummy can. Dr Stephanie Cave’s vaccine book is illuminating.

I have no regrets, I place no blame. Autism is a complex and ugly disease, mainstream medicine and modern science is far from achieving the cure nor determining the causation. Vaccinations, environmental toxins, pesticides, pollution, viruses, genetics, food intolerance, over-usage of antibiotics in medical practice as well as antibiotics pumped into chicken and cows that we eat, genetically modified food sources, allergens, immune dysfunction, metabolic disease and mitochondrial disorders are only a few of the many causative factors. As a parent, it is our responsibility to ensure the health and safety of our children. Never underestimate your mother’s instinct. Autism is Treatable, but Prevention is even better.

>The Year of Recovery….

Posted on January 3, 2011 by Admin

The 2 sisters enjoying the horse and cowboy show

This time last year, Maya was getting closer and closer to recovery. I kept saying “It’s so close, I can smell it!”. It was a phrase many friends have heard me saying, an affirming mantra to motivate myself to keep going and keep reaching for bigger and better progress. True enough, I smelled it, I inhaled it and now we’re breathing in the Recovery.

The year 2010 has been the most challenging year as well as the most rewarding ever. I read my previous posting and I was reminded again of how far Maya has come http://mayaviktoria.blogspot.com/2009/12/year-that-was.html . At the start of 2010, Maya was still a child requiring special education and therapy, her Autistic characteristics though lessened were still apparent. By the end of 2010, Maya is now a typical girl albeit with a few quirks. But hey, every one’s gotta have a few quirks and eccentricities right?

In June 2010, after several diagnostic assessments and tests, Maya has officially lost her previous diagnosis of Autism. She now falls under the Non-Autistic range, not only that, she scores rate her to be higher-functioning within the neuro-typical range. To have recovered Maya in exactly 2 years since her diagnosis is truly a blessing, a testament to Maya’s strength and resilience. By mid-2010, Maya no longer required specialized 1 on 1 ABA therapy. She then went on to several different kindergartens, finally in the 3rd and last kindergarten, Maya finally found her groove. She no longer required a shadow aide and has been flying solo for the past 5 months. Scholastically, Maya has excelled. Her reading is above grade-level, her grasp for maths is amazing and she’s getting on very well with drawing and writing.

The 4 amigos in pink

In October, Maya turned 5 years old. She had the birthday party of her dreams, surrounded by her little friends in a kids spa. She has lots of friends and makes friends easily. We can take her everywhere and she’d be beautifully well behaved. Maya has developed a 5 year old sense of humor and makes jokes with us often.

Maya is good-tempered and sweet most of the time, the mood swings of previous years are rare. She’s best buddies with her sister Yasmin and the 2 sisters get up to many mischief together.

Maya is now fully toilet trained in the daytime, at night time we still put nappies on her when she’s asleep though a few times she has asked not to wear nappies at night, saying that she’s now a big girl. Night time toilet training is something for us to forward to this year.

Maya now goes to ballet school twice a week and a jazz dance class once a week. She is begging me to take her to piano class as she has a love for music. She surprised us with her musicality by teaching herself to play the piano. She has finally found a love for bicycling, after 2 years of her little pink bike sitting gathering dust ignored. For Christmas this year, we gave her a scooter, within 1 day she has mastered the art of balancing on it as well as pedaling with the other leg. She goes hard and fast and is a dynamo on it.

Zoom zoom zoom!

Went we went to Sydney recently for Christmas, many friends and family members who have not seen Maya for 2.5 years all remarked at the change in her. They could not believe she was the same girl as before. Previously she would cower away from people, refused to meet anyone’s eyes and never spoke. She was very withdrawn, anxious and gets very easily distressed. Now, she’s gregarious, chats away to everyone, gives everyone a hug, joins in all the fun, plays with all the kids and even adults. Friends constantly told us that they wouldn’t have believed that this was a child previously affected by Autism if they had not seen it before with their own eyes. The before and now is amazing indeed.

Maya now is capable of sensing whenever she needs a break, previously I would notice tell-tale signs that she has had enough and needs a break. This usually occurs in a social setting, when surrounded by crowds and lots of activities. These situations are usually the most stressful for her, though she handles it beautifully now. So long as I could tell whenever she needed a time out, I would take her to a quiet corner so she can chill out and regroup herself.

Recently during the Christmas season, Paul and I would be busy chatting away with old friends and both Maya and Yasmin would be happily playing away with the other kids. Unlike when we were back in KL, most of the time in Sydney I didn’t really take the time to check on how Maya was doing because she was doing great when we went out. Most times, she could fully participate in the entire time we were out. But on a couple of occasions, when in an unfamiliar place, Maya came up to me and said “Mummy, can you find a quiet place for me to rest please?”. So in those instances, I would either ask the host for a quiet bedroom where Maya could chill out for a bit. If we were in a crowded restaurant, I would sit her in her reclining stroller and pull the canopy down low so she could get some privacy. Usually 20 minutes was enough for her and she’ll be ready to join in the fun afterwards. Previously she would keep going until she’s at her breaking point and would fuss and whine because she was over tired or over stimulated. What a great ability, to identify when oneself is over-tired or overwhelmed AND recognizing the need to take a breather. Most adults can’t even do that.

At the farm feeding baby lambs

Now, not only does Maya speak English fluently and beautifully, she is now learning to speak Bahasa Malaysia and Mandarin. Barely 1.5 years ago, we worried if Maya would even be able to master the very basics of one language, now she is well on her way to
becoming multi-lingual. Nearly all our friends and family in Australia remarked that Maya spoke in an American accent. Courtesy of our American-trained ABA therapists:-)

Apart from frequent consultations with Dr Erwin Kay as well as Dr Rina Adeline, we also had the opportunity to consult with Dr Jeff Bradstreet. With him, we delved further into Maya’s heavy metal toxicity. This year we aim to focus on her mitochondrial dysfunction as well as her immunological dysfunction. We hope that this year will see improved health overall in Maya. Her frequent illness, low weight gain and low muscle tone will hopefully be addressed. We will restart our previously abandoned chelation protocol, now to be replaced with Dr Bradstreet’s protocol. I have a long list of action items from our consult with Dr Bradstreet, however I was not able to implement most of them as we had to leave for Sydney almost immediately after we saw him in Bangkok. But now that we’re back, I am excited to implement everything we have learnt, from the consult as well as from the Integrative Care for Autism Conference in Bangkok.

Recently, we finally managed to start homeopathic treatment with Dr Michael Bielby, an Australian MD who also has a special interest in holistic and integrative healthcare. http://www.yourhealth.com.au/select-alternative-doctor-natural-medicine-sydney-nsw.php. Dr Beilby combines conventional DAN Biomed with biofeedback, naturopathy and homeopathy. He uses biofeedback for diagnostic as well as treatment purposes, he also relies on biomedical supplements and homeopathic remedies which he mixes for us specially on the spot. His main concerns for Maya are toxoplasmosis, parasites and heavy metals. His biofeedback treatment and homeopathic remedies will compliment our existing biomedical protocol. We came back with a few bottles of homeopathic remedies as well as a list of action items.

This year, we will also start the search for an appropriate school for Maya. She will be turning 6 years old in October, thus she will need to be in an elementary school. This was a topic that Paul and I have avoided for so long, many of our friends with neuro-typical children have already decided on which schools and have put their kids on waiting lists since they were toddlers. Maya was deep in Autism then, but now we are confident that she is blossoming in the mainstream school. We would most probably choose a private school, and we have yet to decide whether to choose a Malaysian, Australian, British or American curriculum for her. The fees of private international schools are staggering and this will definitely be a factor when choosing. Most importantly, we want Maya to be in a safe and supportive environment, her happiness is of the utmost importance.

The past few weeks when we were in Sydney for the Christmas season, we had the most wonderfully hectic schedule, seeing friends and family every day. We went to the beach nearly every day, ran around the parks and gardens, the girls played with all the kids we knew. Both girls loved playing with puppies and fed birds and farm animals. This was by far the best Christmas we ever had and the best holiday ever as a family. The girls absolutely loved Sydney and on our last day as we were packing for our flight home, Maya yelled at us saying “I don’t want to go back, the holiday is not over!” Both the girls were very sad to say good bye to their grandparents, family and all their friends, especially their adored cousin Jack.

The 3 cousins

A friend asked me recently why I am continually on the go, always trying new treatments. Why don’t I let the current treatments do it’s job and wait for the healing? As many of you know, it is not in my nature to just sit back and wait for good things to happen. If there is something I can do to improve my girls health, even a tiny percent, then why not do it? Imagine, if I had decided to stop and be satisfied with Maya’s improvements 1 year ago, Maya would not be where she is now. Yes, she would still be better off compared to many Autistic children I know, but why close your mind off to the possibilities? Just because Biomed worked wonderfully for me, doesn’t mean that I will not explore other treatments. I had the opportunity to do biofeedback and homeopathy with an esteemed Australian doctor, I grabbed it. I had the opportunity to consult with Dr Bradstreet, a world-class autism specialist, I grabbed it. I will not sit back and watch opportunities pass me by, opportunities that may be of greater advantage for my child. I remind myself to avoid tunnel-vision, always think outside the box, to let go of my fears and grab the opportunity when the universe hands it to you on a platter.

The year 2010 came with many challenges, intense hardships and crippling sacrifices. But it also gave us the biggest rewards ever. I hope 2011 will be just as rewarding. The smell of recovery is sweet, every breath drawn is intoxicating. The glimmer of hope and sunshine many of my friends are already now experiencing is merely a sneak preview of the happier days to come, so hang in there my Super Mums & Dads. The fruits of our labour through therapy, biomed and prayers have come to bloom. Keep reaching for the highest peak my friends, for the air up there is pure and sweet.

>Purchasing Probiotics, Shipping and Hot Climate….

Posted on January 1, 2011 by Admin

Nothing to do with probiotics, but it’s a cute photo

I usually purchase my Probiotics either online or from my DAN doctors rather than off-the-shelf in Malaysian pharmacies. Firstly, because I’m looking for casein-free Probiotics, nearly all probiotics commonly found are cultured on dairy. As our kids are on casein-free diet, we need to ensure our Probiotics are also casein-free. Unless stated otherwise on the label, the probiotic would have been cultured on dairy, thus it is not GFCF compliant.

I also use high-potency Probiotics, the ones usually available in Malaysia are only 5 Billion CFUs per capsule, occasionally you can find 10 Billion CFUs. I usually give my girls 25-50 Billion CFUs of multi-strain probiotics daily. However for post-antibiotic treatment, I would give 100 Billion CFU daily for at least 2 weeks. Trusted brands like Klaire Labs, Kirkman’s, Custom Probiotics, New Beginnings and a few select others carry several different types of casein-free probiotic formulations ranging from 20 Billion CFU per capsule to even 100 Billion CFU per capsule.

Some parents look for liquid Probiotics, preferring the liquid forms over capsule forms. I don’t know of any liquid casein-free Probiotics so far nor where to find them. There are several pediatricians in KL who carry liquid Probiotics (cultured on dairy), so please check with your doctors or in certain major private hospitals. Personally I have never used them as I find that the CFUs are quite low. Secondly, I find that opening a capsule of probioitics and mixing it into water, juice, rice milk or any other type of liquid is very easy. Most Probiotics dissolve easily into liquid anyway, so to me the search for a liquid probiotic isn’t a priority.

Apart from the high potency and casein-free formulation of these expensive Probiotics, one of the main reasons why I would only buy refrigerated Probiotics and never any stored on the normal shelves is that the live cultures are either half-dead or completely dead by the time we consume them. They’ve been sitting in hot warehouses and in store shelves for a few months before perhaps. So, check the manufacturing date of everything before we buy. Personally, I wouldn’t waste my money on unrefrigerated probiotics, regardless of what the charming sales person says.

You can purchase different brands of casein-free Probiotics online, most popularly from www.spectrumsupplements.com, www.iherb.com and www.b2bdiet.com.sg. Also, check on the KL Biomed forum regularly as many parents also buy extra whenever they purchase supplements. Many of our amazing super parents are kind enough to sell a bottle of their precious stock to another parent in need. All you need to do is ask. In Malaysia, you can find Klaire Labs Probiotics at Dr Eddie Chan’s clinic in Puchong. See here for his contact details http://mayaviktoria.blogspot.com/2010/05/dan-doctors-in-malaysia.html. In Singapore, Dr Erwin Kay www.kcsmed.org stocks Klaire Labs, Kirkmans, Culturelle and several other brands. In Jakarta, you can buy Kirkman’s and Klaire Labs probiotics from Kedai Radita, please contact them directly at bagina@cbn.net.id. In Bangkok please contact TRIA Intergrative Wellness at http://www.triaintegrativewellness.com/ an affiliate of Piyavate Hospital. In Hong Kong, you can visit Little Giant www.littlegianthk.com. Please refer to this previous posting on the many types of Probiotics available, though bear in mind that since then I have tried other different brands too as it is recommended to rotate our probiotics http://mayaviktoria.blogspot.com/2010/02/which-probiotic.html

When purchasing probiotics online or from overseas, the cost of shipping is a great concern. The cost of shipping Probiotics when buying online will vary according to weight, which courier company they use and volume of course. For these packages, courier companies usually charge for a minimum of 0.5kg per package. So the cost of delivery for 1 bottle of probiotics is probably the same even when you include 5 other supplements included in that package. Probiotics must be shipped with ice packs and using the faster delivery option, usually 3 working days for good reason. With our tropical climate, many worry that by the time we receive the package, the probiotics would have been exposed to high heat and is no longer viable.

Wheee!!

These probiotics specialist companies usually provide higher amounts of CFUs than stated on the label, this is the contingency plan for shipping and handling. They guarantee the amount of potency as stated on the label upon arrival of the shipment within normal circumstances. Even if exposed to high heat during shipping, any deterioration is still acceptable because there’s leeway for it. So I would still accept the Probiotics as I assumed it came with an ice pack originally but then it has melted by the time it arrived to my doorstep.

I have ordered probiotics from the USA as well as Singapore, it takes 3-4 days from the US to reach me, and 1-2 days from Singapore. Ice packs are included upon shipping, however by the time the package arrives to me, the ice pack is usually melted and the probiotics aren’t cool anymore. To me, it’s still fresh and acceptable as it was probably only warm for 1.5 days judging on how fast the ice pack melted. However, if no ice pack was included, then please contact the shipper.

One of my shipments for S.Boulardii from a supplier accidentally did not contain any ice packs when they packaged it, when I contacted the company they apologized and gave me a discount. I was still happy with the products and I could still see that the antifungal properties were working on me and my girls. Leaving S.Boulardii unrefrigerated for 2 days even in our weather is not a big deal.

Take note that Culturelle is usually shipped without ice packs. However the capsules are in special foils and the manufacturer guarantee freshness, though it is recommended to store it in the refrigerator upon receiving it. New Beginnings Probiotics are also shipped without ice pack, but also recommended to be stored in the fridge once received.

When I met the Klaire Labs guys in the US, they personally showed and explained to me a chart/graph and heat/temperature study of viability and potency of their probioitics. I explained about 3-4 day shipping and high heat and humidity to Malaysia, the study s
hows they guarantee the stated potency and showed how the potency decreases over time. They also ship to hot climates like Arizona, Hawaii and Middle East. If exposed to normal high heat of 30-35C for up to 2 weeks, they still guarantee the freshness and potency of the cfu stated on the label. It starts to decrease by 2-5% the next 2 weeks if exposed to high heat. But if continually exposed to high temp for 2 months, then efficacy decreases by at least 50%. I believe that these probiotics I order are from companies that have the highest standard in manufacturing and handling too.

Christmas Carols in Sydney

For many of us biomed parents, budget is always a concern. And we’re always trying to find ways to minimize cost. However, I highly recommend buying the best probiotics you can afford. I’d rather buy cheaper Vitamin C, but I would splurge on probiotics. Though at face value, locally found probiotics are cheaper by the bottle, imagine trying to do 50 Billion CFU per day on locally sourced probiotics. You’d end up swallowing 10 capsules a day. Cost wise, 1 bottle will only last you a few days. So, locally available probiotics may seem cheaper, but please consider the potency per capsule and calculate the dosage on how much is needed. You may think that the cost of specially imported Probiotics seems expensive, but in the long run, it may be more cost effective plus more effective treatment wise overall. And since many of our kids have issues with casein and dairy, there’s no point doing the casein-free diet but you still feed them probiotics cultured on dairy everyday, kinda defeats the purpose really.

A lovely friend SY has shared on how to do a viability test to check if your probiotics are still fresh and ‘live’. She recommends opening a capsule of probiotics and mixing it into a small amount of milk or rice milk. Place the container in a warm place and leave it for a while. If you find it turns solid, lumpy or custardy, then it means the good bacterias are still alive. Apparently this only works on probiotics that contains acidophilus or strep strains. So, get the best probiotics you can find. Don’t worry if the probiotics you received are warm upon delivery so long as there was an ice pack in it. And so long as it was by express courier. At the very least, you can always do the viability test. Who knows, it might taste yummy with a bit of honey, vanilla and fruit, yumm….. Happy 2011 everyone!

>LDN, Pneumonia and Bangkok….

Posted on December 1, 2010 by Admin

>We have started on LDN (Low Dose Naltrexone) a couple of months back. It is a topical cream based in Emu Oil to be applied at night. We saw Dr Jacquelyn McCandless’s presentation at an Autism Conference in Hong Kong and were highly impressed with her research and clinical experience with LDN. Please refer to Dr J. McCandless work on the benefits of LDN. You can also join her LDN Yahoo Group at http://health.groups.yahoo.com/group/lowdosenaltrexone The use and benefits of Low Dose Naltrexone (the key word here is low-dose) are varied. Not just for Autism, but also multiple sclerosis, cancer and other autoimmune diseases. I also love Dr Kurt Woeller’s succinct explanation of LDN, very easy to understand. Please refer to http://drkurtwoeller.blogspot.com/2009/01/autism-benefits-of-low-dose-naltrexone.html

After several months of wrangling to get LDN into Malaysia (thank you RR for making this happen!) we finally got our first supply of specially compounded LDN cream. We immediately started applying it on Maya’s feet every night. Though many parents report that the smell is lovely, for us it smelt awful. My husband akin it to buffalo snort. Though how he would know what buffalo snort smells like, I have no clue. We hate the smell but love the effect.

From your own research, you’ll understand that amongst the many benefits of LDN, it also works as an opioid-blocker, which indirectly increases the production of endorphins- the happy hormone. It’s role in immune-modulation is also a big incentive for us to start on LDN fast.

Within a week, both Paul and I noticed some nice gains in Maya. She was more loving, more sociable and very sweet. Though Maya has always shown us love and affection, we saw a more loving, caring and compassionate side of Maya. She was much nicer to her sister Yasmin, she made friends very easily and was more at ease in social situations. Maya would also seek our company more, always coming over to give us hugs and kisses. She was even hugging and kissing her sister. And she started giving and receiving hugs from her own friends as well as well from close adult family friends. She showed a depth of emotion that we never realized possible. We always felt that Maya was already warm and loving. But after just 1 week of LDN, she showed a generosity of spirit that was so apparent to us.

Paul was excited to try LDN on himself too as we were very impressed with Dr McCandless herself. She is a living testament on the benefits of Biomed and LDN. For some reason, Paul was in charge of applying LDN on the girls. He also applies it on himself. Initially I would play the good wife and gave him a foot massage every night with the LDN, but that ended after a few days.

After the first week, we decided to apply LDN on Yasmin too. Yasmin has aways been more sociable and affectionate than Maya. However one of the many benefits of LDN is it’s positive effect on the immune system. As you know, immune dysfunction is a huge issue in our household right now. And yes, Yasmin too was even more loving and cuddlier than ever. Both girls got along even better than before, not only were they playing together more often, there were less fighting amongst the sisters. They were considerate to each other and even sharing toys and games.

We love the social gains and new range of positive and loving emotions that LDN brought out in Maya and Yasmin for the past few weeks. However, this also coincided with a seemingly never ending period of colds, flu, mild fever or coughing. Both the girls were either coming down with a cold or one of the other illnesses. None of the illnesses were particularly serious, they were considered mild but they would linger on longer than usual.

As some of you know, the colds, flu, coughs and fever lingered on in our household for a few weeks. We tried many natural remedies to treat them which unfortunately did not work for us this time. It finally developed into full-blown pneumonia, both girls were diagnosed with pneumonia by our local pediatrician. It wasn’t severe enough to warrant hospitalization, thank goodness. We took our two little girls home with a prescription of antibiotics and other medications. Antibiotics when used judicially is a great, in this instance it came through for us. Within 2 days of antibiotics, we noticed a great improvement in the girls’ health.

The girls now are recovering nicely from their bout with pneumonia. Maya no longer have any symptoms though Yasmin is taking a little bit longer to regain her health. Maya however seemed just a little bit giddy, a bit more tantrummy, she displayed slight non-compliance and anxiety. Both girls seemed to be fighting a little bit more often. As usual, whenever the girls are on antibiotics, we started to notice some kooky yeast behavior a few days later. We quickly put Maya on Diflucan and Yasmin on Nystatin. Within HOURS of giving Maya the Diflucan, she was back to her normal, sweet loving self. She wasn’t picking fights with Yasmin and was more compliant.

So where does LDN come into this story? Paul and I were scheduled to fly to Bangkok the next day for the Integrative Medicine for Autism Spectrum Disorder Conference in Bangkok, Thailand. Apart from the opportunity to learn more about biomedical treatments and other alternative treatments for Autism, we also took the rare opportunity to consult with Dr Jeff Bradstreet. Sometimes, the universe seems to collide in the nicest way possible…..one of our own trusted DAN doctors from Indonesia was also attending the conference. We knew that Dr RA has also worked with Dr JB several times in the past, having met him at previous DAN conferences and think-tanks. I requested for her to join us in the consult with Dr JB.

Paul and I decided not to bring our girls along to Bangkok, we had specific issues we wanted to consult with Dr JB and we had enough test results and experience with biomed consults to make the most of this meeting. Having Dr RA there was a huge bonus, Paul and I marveled at how quickly Dr JB got to the essence of our girls with the help of Dr RA. The consults for both girls took 2 hours, which still went pretty quickly to us. Dr RA was able to answer many of Dr JB’s more in depth questions, questions which both Paul and I would be floundering with. We came back with several things to work on, getting deeper into both Maya and Yasmin’s medical issues.

Both Maya and Yasmin presented their own unique combination of mitochondrial disorders, heavy metal toxicity and inflammation. Because of these, LDN though providing us with the lovey-dovey and sweetness benefits, also acted as an immune suppressant for my girls. Thus making the girls more susceptible to illnesses. Therefor, we now had to stop LDN with the girls, at the moment the risks far outweighs the benefits. Many other kids can benefit from LDN enormously, bringing out the happiness, good moods and social gains. Most kids will benefit from the immune-modulating benefits of LDN, however with my girls’ unique mitochondrial issues, LDN isn’t the best for us. Dr JB and Dr RA will now concentrate on helping us with the girls immune modulation, mitochondrial issues and chelation. Since Paul and I bemoan the loss of the sweetness factor of LDN, Dr JB recommended Oxytocin instead. For now, I’m happy to be back home in KL with both my girls and am gearing up to implement the long list of things to do that we learnt in Bangkok.

>Joy Of Food….

Posted on November 22, 2010 by Admin

We desperately want to address Maya’s feeding issues and low (nonexistent) weight gain. Maya is in the extreme lowest percentile in weight for her age. Her height though on the low side, however is not a worry for us as she continues to grow in height. Maya is 5y1m, Yasmin is 3y8m. Both are the same weight, that’s just not right is it? Neither girls put on weight for about 8 months each, at different times. Recently, they put on 1kg each, after 6 months of absolutely no weight gain. And the 1kg gain took another 6 months as they would lose the weight again and again after each bout of illness. I don’t even dare look at the weight and growth charts anymore, Maya has always been on the lowest percentile in weight ever since she was 6 months old. Though you wouldn’t have known it, Maya weighed 3.5kg when she was born, a very good weight indeed. Yasmin was a whopping 3.75kg at birth. But now both girls hover between 13.5-14kg for the past 6 months.

There are days when Maya absolutely refuses to eat, we are lucky to get her to eat 3 tablespoons of food the entire day. On rare occasions, Maya has a good appetite and though she still would not spoon the food herself, at least she doesn’t fight us when we feed her. Generally, mealtimes are incredibly stressful and frustrating. The photo above is one of those rare times where the girls are happy to not only eat, but also feed themselves. Though that’s mainly because their beloved cousin Abang Imron is there to eat with them. We found that having a friend or cousin to dine with helps to encourage them to eat along. Though during those occasions we usually run out of food, as I am so used to cooking small portions for the girls’ small appetites, other people’s kids usually eat a lot more. But I always happy to have the girls’ little friends over, we love having them come over to play and eat with the girls.

I am thankful everyday that we are one of the few lucky ones in the Autism world to have recovered our daughter. The ABA therapy, GFCF diet and tons of supplements have brought us to this point where Maya is in a mainstream school, with lots of friends and activities and no longer requiring additional support or therapies. To most people, they see a typical 5 year old girl and our life is a vast difference compared to even a year ago. However, her feeding issue is still something we struggle with everyday. I won’t even go into the GI disorders, food intolerance, metabolic and mitochondrial issues that each girl presents. We desperately want our girls to be healthy, but how can they be healthy if they can’t eat?

Apart from continually trying to address their myriad of health issues, we’ve tried the method of “let her starve, if she’s hungry enough she will eat”, that failed spectacularly. We try to do family mealtimes, we tried sitting in front of the tv or lots of toys or arts and crafts projects in the hopes that they are distracted enough and will sit long enough that we can spoon some food into them. This has worked the best for us. We often do the chasing around the house with a spoon, that worked for a while though it would take us 1 hour to feed her. By the way, Yasmin is the same. We too struggle with feeding her, though her weight is acceptable and she’s not skinny like Maya. However, obviously her metabolism is different to her sister. Yasmin was an extremely good eater ever since we weaned her onto solids at 6 months. The difference between her and Maya was amazing, Maya who has always hated to eat since the beginning. However, Yasmin lost her appetite and refused to eat after her bout with Rotavirus infection. She also started to present many Autistic features and had many behavioural and developmental issues. But that’s another story. The infection impacted her gastrointestinal system is myriad ways. Till now, Yasmin is a poor eater though marginally better than Maya at times.

At school, Maya would eat a bit though a couple of times she has gotten agitated and even got a bit teary when the teachers insisted she finishes her food. When I questioned Maya, she said that she didn’t want to eat the big plate of food. I asked the teacher about it, they said that she was given the same amount of food as all her other classmates. They insist in a very kind manner that the kids finish their meals, though majority of the kids don’t need to be reminded and many request for 2nd helpings. The teacher and I worked out that Maya should be given a much smaller portion so as not to overwhelm her. And though the teachers should gently encourage her to eat, it shouldn’t get to the point where Maya would get over anxious and stressed out.

Remember, this is a girl who is well-behaved, compliant, attentive and friendly at school, a student who adores her teachers, has lots of friends, joins in every activity and has lots of fun in school. It is very clear to us that eating is a huge issue for Maya, even bigger than we initially thought. Though kudos to Maya, she sits at the table with her classmates every day, tucks her napkin in her collar, feeds herself albeit only a few bites and stays seated until everyone is done. She’ll happily tell me what she had for lunch, how much or how little she ate, which friend ate a lot, who liked to eat what etc. Most days, the teachers manage to encourage her to eat, though usually she only eats a very small portion. The only thing she adamantly refuses to eat in school is porridge. Also known as congee, a staple in most Malaysian kids diet. It’s Porridge Day once a week, so the school cook will kindly cook rice instead specially for her.

Both girls are extremely poor eaters, I cannot emphasize enough how bad their feeding issue is. Most Autism kids I know are big eaters.Though I know a few kids with really severe feeding issues, much worse than Maya’s; it still doesn’t take away the monumental struggle we face every day feeding the girls. And we struggle with this 3 times a day, every single day for the past 4.5 years…… They are extremely picky eaters, Maya will give a tentative lick of every food before hand. They are so picky that when at a birthday party, the girls were monumentally dismayed that the gorgeous birthday cake turned out to be a jelly cake. Made of agar-agar, in Malaysia is it common to buy these beautifully decorated cakes made of the firm jelly. And the kind mother of the birthday girl, quickly offered a 2nd cake she had in the fridge. We insisted she didn’t go to the trouble, as it was a brand new unopened cake presented as a special gift from a friend to them. I felt sorry for the mum because the girls spat the cake out immediately once they realised it was a carrot cake. We apologised profusely, but they were very kind friends and were extremely gracious about it.

Their appetite has improved quite a bit ever since we worked on some of their gastrointestinal issues. But even then, it is still a struggle. This is a long hard road till their gut is healed. Though we now live in the privileged Land of the Recovered, we do get reminded that we are recent arrivals and that we have to work hard to ensure that our Visa isn’t revoked. By maintaining the diet and supplements, we enjoy a lovely life with Maya. Maya no longer has Autism, for the moment I am certain she will not regress. However, we have been advised that puberty will bring an onslaught of other issues, however we will deal with it when the time comes,

We no longer enforce the GFCF diet as strictly as we used to do. After 2.5 years on a strict diet, we chose to loosen the reins now. At home, we still maintain the diet. However when we go out, the girls are allowed to eat gluten and casein, provided they
get a healthy dose of DPP-IV digestive enzymes. We usually take the girls out to eat at most twice a week. The girls would happily eat cakes, cookies, chocolate ice cream or their ultimate current favourite, croissants all day long if given a choice. Maybe, just maybe they’ll have a sandwich. But they are not interested in any other food at all. At home, we still struggle to feed them. I can’t count the many times we’ve had plates of food kicked out of our hands and pushed off the table, food scattered all over us, the furniture and the floor. Though now most times the girls have learnt to politely refuse the food rather than kicking at it. Progress comes in small steps indeed. By sheer hard work, tons of reinforcers and immense patience, between the nanny and I we still manage to feed them rice, many varieties of vegetables, chicken, fish and beef and a very limited range of other GFCF meals that the girls would tolerate.

But when we go out, the girls refuse to eat a proper meal. Even McDonalds’ cheeseburgers and fries or even pizza are pushed away! These are foods that most kids adore. How’s that for feeding disorder? We cook healthy delicious meals everyday, often we even cook 2 different meals as both girls have very distinct preferences on what they will eat. The only consensus is the Malaysian staple Chicken Rice, this is the only food that both girls will willingly eat, provided they feel like eating of course. And the only healthy food that Maya would willingly eat, even demand is avocados. She eats them straight or mashed with minced garlic and lemon juice ala guacamole. Avocados are an imported luxury food, it’s expensive and can be hard to find in Kuala Lumpur, but we are happy for the added expense of this nutrient-dense fruit in Maya’s diet. This was all due to Paul, how he got her to eat and like avocados still amazes me.

The girls very rarely want to eat proper food, though they can eat gluten loaded snacks like a champion anytime of the day. They are just not good eaters. It hurts Paul and I to the core when we see other kids tucking into their meals with gusto, even asking for 2nd and 3rd helpings. We marvel at those little kids’ voracious appetite, they eat everything and at times the parents can’t keep up with their demands for food. The many times we hear a parent say “My kid just won’t stop eating! He eats all the time!” And Paul and I always bite our tongue, though in our hearts, we are screaming “I wish our girls would eat!!”

When we go out to eat as a family, we usually eat in Asian restaurants or food courts. Someplace we can always order a rice dish or a chicken rice. If sufficiently motivated, we do get them to eat a small bowl each. The maximum we could get the girls to eat was half a chicken rice plate. Though usually a quarter is the norm. But eating in strange, new or interesting places is hard for the girls, they are too excited or too anxious to sit passively and eat or be fed. Though now, they are extremely well behaved when going out, getting them to eat in public is an immense challenge. However, this is a luxury for us, for the past 3 years we very rarely took the girls to eat out, or even go out in crowded places. It would have been too much of a nightmare. Most of the time, Paul would wolf down his food, while the nanny and I desperately try to keep the girls under control, then it was my turn to gobble up my food while Paul took over. Most of the time, I only got to eat half my food before we had to make a quick exit. How I still remained fat is still a mystery. And 99% of the time, the girls could never hang on long enough for the nanny to eat. We usually had to get take-away for her. Our long suffering, ever amazing nanny has learnt to eat as and when she can, because most days, neither she nor I get to eat lunch until 4pm. We always joke about some day we’ll buy her a lobster dinner…..

When we go to people’s houses or private events, the girls refuse to eat. They may make a show of having a plate of rice and a piece of chicken in front of them, but it would remain untouched. At times, the girls would allow me to put plain white rice only, refusing to even have ANY thing else on the plate. But yet again, the rice would just be swished around the plate, not a single bite eaten. And if the host served Briyani rice, or any rice that is not white, it will be rejected outright. They won’t even go near roasts, pies, pastas, noodles, soups, casseroles and most other foods, Asian or Western. Most people when seeing the girls’ plate are usually horrified. Remarks like “Nasi putih saja??” i.e. “White rice only?” are common. I get looks of disbelief and derision, we can just hear them thinking no wonder the kids don’t eat because the mother doesn’t feed them anything etc. Most of the time, I just shrug, too tired to explain their feeding issues to people who don’t have a clue that there exist children who does not like to eat.

I could make a big show of heaping their plates with lots of protein and vegetables, just to show what a good mum I am. Though I know all that precious food would just go to waste. In Asian culture, food is sacred and to waste food is sacrilege. I can even make a big fuss of feeding them, even though other kids their age are happily feeding themselves with gusto, not needing their parents to spoon-feed them. I learn from experience to just let it be. To add a piece of vegetable on Yasmin’s plate in public would usually result in screaming tantrums. To insist that Maya have a spoonful of the delicious food that the host has cooked, “Just one bite darling, just taste a little bit, it’s really yummy, see your friends are eating it etc”, hasn’t helped. And it only gets worse, because people though well-meaning, starts to get in on the act, thinking that they can reason with a previously Autistic 5 year old. Though Maya has lost all her Autistic features, with her long history of chronic GI disorder, oral sensory issues, feeding disorder and anxiety with strangers amongst other things……Guys, you’re just making it worse. Just BACK OFF. You do not want to witness how shockingly violent and long drawn out reaction this can cause. It will be distressing to my kids, you and all your guests. I certainly do not want you to see this side of our life.

I have never ever expected for our hosts to provide a GFCF option for our kids, though many are kind enough to offer. And some are kind enough to make sure no forbidden desserts are served in case of temptation. That is incredibly thoughtful of you, but we would not hold your responsible for our dietary choices. We KNOW the girls can spot a cake or a cookie a mile away. We know that every time we step out of our home, there will be temptation everywhere. Though I do know some parents when invited to dinner at someone’s home, then act with indignation when there is no GFCF option for their child and demands that the host provide one now. Autism Biomed kids are either on the GFCF diet, some are also on a diet free from soy, egg, corn, sugar, additives, preservatives, MSG, artificial sweeteners and colouring. A few are on the Specific Carbohydrate Diet or the Low-Salicylates Diet. Duh, did you inform the hostess before hand of your child’s dietary requirements? Most hosts are gracious enough to oblige, though many don’t understand what the GFCF diet is and infractions usually occur. I certainly don’t expect my friends to know off-hand my kids’ diet du jour. How about be grateful people still invite you and your Autistic child to the party, so act like a mum and pack a meal from home. You cannot expect others to be responsible for YOUR child’s dietary needs, that’s your job.

We ALWAYS pack our own snacks. We usually feed them before we go out anyway. At times, I even pack a full meal complete with little bowls and cutlery just in case we could coax the girls to eat when we’re out. We are immensely grateful to be invited, especially by close friends and family who have seen first hand just how challenging our kids are. Most people never inv
ited us over again or even come over to our place after witnessing an ‘episode’. Though most of those episodes though shocking to those who do not live with Autism, were pretty mild in comparison.

When the girls are sick with the cold, flu or fever, which is often, their appetite really takes a dive. This is an especially hard time for us not just dealing with the illness, but trying to get them to eat. When we feed them at home, we also smuggle in supplements. We mix a bit of supplements into every mouthful. So when they are sick and lose their appetite, it usually is a precursor to a few days of non-compliance, tantrums and anxiety at home. When Maya misses a few days of supplements, some old behaviors will come back depending on which supplements she misses. Recently she was moody, refuses to wear clothes and grinds her teeth at night because she missed several days worth of 5HTP, TMG and calcium. Though Maya continues to behave well and act typical in school and when going out, at home she would fall apart. Most people don’t realize the heroic and almost violent effort it took Paul, me and the nanny to get Maya dressed and out the door every single day this week.

My kitchen is always fully stocked with organic vegetables and many varieties of fruits. I’m a creative cook, I constantly try many recipes and I make sure that there are always at least 2 meal choices on any given day. I even have back-up meals that I’ve cooked previously and keep in the freezer, ready to be defrosted in case of emergencies. Yet what do the girls do? They keep looking in the fridge and all the cabinets for “special snacks”. They beg, yes BEG for real bread, for cookies, for cakes and ice cream. It’s heartbreaking to see Maya moaning that she’s hungry, yet she would not eat the meals we offer her. She would rather starve herself and hold out for the gluten and chocolates that she craves. Visions of a a future anorexic Maya holds fear in my heart.

We do get the well-meaning lecture on how we should expand their repertoire of foods, that if they were offered more choices, more yummy cooking than mine, take them to a fruit shop and let them choose all the fruits they want and they will then want to eat the fruits, offers to cook their delicious vegetable soup that they swear other picky kids absolutely loved etc. I’ve heard them all. And they all worked diddly squat. We have always agonized over the girls’ feeding issue, but the worry has grown in the past few months. Ironically it grew the more often we participated in activities that normal families do ie. go to parties, get invited out to weddings, kenduri, lunch, tea and dinner. Things that we couldn’t do in the past because of Autism. By being able to take the girls out often (something we are immensely grateful for) it has amplified their feeding issues. Having them sit side by side with another child who has a healthy appetite every single time we go out has magnified the severity of their feeding disorder. How ironic that the social life we dreamt of for so long would also bring a whole new heightened sense of worries.

Even in Autism land, majority of the kids I know are good eaters. They’ll eat anything and lots of it. There is even jealousy amongst Autism families, I for one am guilty of the envy I feel when I hear a friend’s Autistic child loves to eat. But in the whole scheme of things, I’ll gladly take normal, typical, recovered-from-Autism life with feeding issues compared to the isolated world of Autism, where Maya’s feeding issues were minuscule compared to the other debilitating features of Autism. In May, Dr James Partington, the renowed expert in ABA and Verbal Behavior Approach did an amazing presentation in Hong Kong and Singapore. I attended both conferences. He mentioned using food reinforcers during therapy, citing that this works very well because “What kid doesn’t like food?” Obviously he has never met my kids.

So yes, next time you see us in public and my girls either gorge on cakes or they eat nothing at all, please know that it hurts us to see our girls eating nothing yet your child eating healthy foods, even vegetables and fruits. We definitely don’t hate your guts for it, congratulations on a job well done. We are envious and a little be sad. Please understand that some children with chronic gastrointestinal disease and metabolic issues have severe feeding disorders. Be assured that we do feed them healthy food at home, they have been known to eat broccoli and spinach too. But for now, eating will remain a private occasion for the girls. I don’t know how long it will take us to heal our children’s bodies, but we are doing all we can. We hope that one day, Maya will discover the joys of food and have a healthy attitude towards eating. So if you happen to see a harassed mum in the Pavillion food court desperately trying to shovel chicken rice into her 2 little girls, that’s probably me.

>Farewell Holland, Ciao Italy…..

Posted on November 16, 2010 by Admin

You may probably have read Welcome to Holland, a beautiful piece written by a parent with a child with Autism. Read it here. Yes, I expected Italy but I landed in Holland instead. But after living in Holland for many years and experienced all the joy AND sadness that is Holland, we look forward to an adventure in Italy again.

It is up to each parent to decide how they wish to treat their child’s Autism diagnosis. No one ever expected to have Autism in their lives, how we choose to treat it or not is a very personal decision. We can neither preach nor cast judgement on them. Every child with Autism is different, each family’s ability to deal with it varies. Even Autism parents are guilty of being judgmental of other Autism parents, in fact even more so. I too am guilty of being judgemental, though I remind myself to refrain from judging others. However, should someone come to you for help or advice, be generous with your spirit and encouragement, if not your time, money or effort.

Maya turned 5 years old a month ago. Her life is drastically different compared to even 1 year ago. Maya goes to a normal kindergarten, she enjoys school very much and has lots of friends. The teachers have never once remarked anything different about Maya compared to her classmates. Except that she is very eloquent, has great imagination and is a very poor eater. She gets invited to lots of birthday parties, where before we were never invited anywhere because of her Autism. She has lots of playmates, she even makes friends very quickly and easily when meeting new children at parties, the park or playground. Maya also goes to ballet class twice a week and her teacher even recommended she start preparing for formal examinations based on the Royal Academy of Ballet curriculum. Maya also goes to a Jazz dance class once a week which she greatly enjoys.

We go out for family outings often, last weekend we had tea at a fancy hotel with a live jazz band and singer. Maya loves music especially live music and she was mesmerized by the beautiful singer. The girls were perfectly behaved and we had a great time. This was something we could never imagine doing a year ago. Maya would be screaming and rolling on the floor because the acoustics and visual stimulation would be too much for her to bear. Instead, we were the perfectly normal family with 2 well behaved little girls. Maya also loved going on the carousel and was thrilled to go to Sunway Lagoon a few weeks back.

A couple of weeks ago, right after Jazz dance class, we went to visit Dr Rina who had just arrived in Kuala Lumpur. It was a social visit just to say hi and catch up with her. Maya greeted Dr Rina at her hotel and they immediately started playing together. It was funny to see her playing hide and seek and laughing with her doctor. Maya also said that it was time for her annual check-up and showed her sore toe to the doctor. She was smiling and telling stories and had fun visiting her ‘friend’. After the visit, Maya and I had dinner with Paul and his friend at the fancy Rama V restaurant. It was quite late for Maya to be out, but she was perfectly well-behaved, she was polite and even made conversation with Uncle Anthony, someone she had never met before. It was a long demanding day for a 5 year old, but Maya did us proud.

Maya loves going on holidays, she also loves staying in hotels. When we asked her what she would prefer for her birthday, we asked if she wanted to go on holiday or have a birthday party in KL, she replied that she wanted to have a birthday party at the Hard Rock Hotel in Penang! Unfortunately, we couldn’t afford to do that, so we had a small party for her at a kid’s day spa in KL with manicure, pedicures and hairdos for her and her friends. Maya was thrilled.

We still continue with the GFCF diet at home however we are not as strict as we used to be. After 2.5 years on the diet, Maya can tolerate some casein and gluten, though too much in excess tends to lead to some tantrums, meltdowns and non-compliance. She is on a range of supplements that she still requires such as Vitamin B6, C, cod liver oil, probiotics, culturelle, s.boulardii, TMG, 5HTP, MB12 shots, calcium, magnesium, zinc, biotin, Transfer Factor and Epsom Salt baths. A few months ago, we introduce Vitamin D3, a month later we started DMSA chelation and the next month we introduced LDN cream (Low Dose Naltrexone). Within 2-3 days of chelation, her gross and fine motor skills improved, within 1 week of LDN, we noticed Maya was much nicer, affectionate and more sociable. Hopefully, it will help with her immune regulation too.

A few days ago, we did another round of blood tests with our local paediatrician. Because we were doing chelation, we needed to monitor her health and needed to do regular CBC, renal and liver function test. Though we do chelation with Dr Erwin, our local paediatrician is always willing to help with monitoring her health and do the necessary tests when required. I am extremely grateful for the support and understanding of Dr Nur Atiqah and most especially, for keeping an open mind and receptive to biomed. Though she herself is a not a biomed doctor, as a paediatric GI specialist she is well aware of the GI and immunological issues that children with Autism have. I held Maya while the lab technician quickly and efficiently drew her blood. Maya of course cried, but calmed down soon enough. It was just me, Maya and the lab technician and it was over in 2 minutes. What a trouper Maya is.

She still gets colds and flus like any other child going to kindergarten, but they are less frequent, less serious and she usually recovers faster compared to before. We still wish we could do more in improving her immune function. Due to the colds and flus, our chelation protocol is extremely slow as we obviously could not go ahead with chelation whenever she was sick. We still consult with Dr Erwin Kay, we have been consulting him every month without fail since April 2009. But a couple of months ago, he was so pleased with how far the girls have come that he said that I can ease back and consult him only once every 2 months. And that’s just mainly for follow ups as we are doing chelation and it needs to be monitored. I still feel odd not to see him every month and I feel that I am losing his guidance, though he has always and will still be there for us whenever we need him.

As you know, I am never one to ease the throttle, I believe in going full-speed at most times. I look forward to speaking in Bangkok on 25-27th November. I am honoured to be invited as one of the parents presenting on our children’s recovery at the Integrative Care for Autism Spectrum Disorders Conference 2010. Dr Jeff Bradstreet is the keynote speaker and I always learn so much whenever I see him present. See here for more information on the conference . I hope to see you in Bangkok.

Maya continues to progress and improve even to this day. Her reading is amazing, her writing skills are improving, her language and behavior are like a typical 5 year old. Her coordination in dance classes is better, she can follow the choreogra
phy and pays attention to the dance teacher. Her Mandarin and Bahasa Malaysia vocabulary is growing every week. She has lots of friends, her socialization skills have improved tremendously. Her range of emotions, feelings and communication skills have come a long way indeed. She plays with her sister and we are starting to notice more big sister behavior as we always tell her that she must take care of her little sister. At times, the sisters squabble and fight, but there are more giggles and laughter too. As a proud mama, I can’t help but gush about how incredible my daughter is. At times, I write about the challenges we face with Autism and the treatments we did. But this is me remembering and appreciating my daughter as she is now. She makes me proud ever single day. During our Autism days, every morning I would wake up asking myself if this was going to be a good day or a bad day. Most days were incredibly bad days then.

People used to ask us how Maya is doing, and now it is nice not having to lie for a change whenever we say “She’s doing fine, thanks for asking!” Before, it was just easier to say “She’s fine” rather than explain that she’s still autistic, she still tantrums, we haven’t slept for days, she bit her toes until it bled and she banged her head on the floor again and again. But, we still appreciate the concern….

Nowadays, we still face the normal challenges and stress that any family and parents have. We still worry about our kids health, their future, the state of our minuscule savings, paying the bills, their education, dealing with illnesses and many more. We still have to stretch our dollar to afford the necessities. But now our home is full of happiness and laughter. Without Autism in our lives for the past few years, we would not have appreciated how privileged our life is. Now, every day is a good day….

So though we detoured into Holland, we are back on track in Italy. We look forward to getting Maya acquainted with her Malaysian and Australian heritage. Maya has already shown her love for travel, following in the footsteps of both Paul and I. We both love traveling, long before we met each other and settled down to have a family. And we are pleased to see that Maya too has gotten the travel bug. Maya is excited to go back to Sydney for Christmas. The last time we went back was more than 2 years ago. Since then, we could not afford the time nor the money as all our resources went towards recovering Maya. She keeps on talking about Christmas in Sydney and seeing all her family and friends there. The world is for her to explore, we will keep cheering her on however far she chooses to go…. Selamat Hari Raya Haji and Happy Eid to all, maaf zahir batin.

>Sitting On A Tack….

Posted on November 15, 2010 by Admin

>”If you are sitting on a tack it takes a lot of Risperdal to make it feel better. The appropriate treatment for tack-sitting is tack removal. If you are sitting on two tacks, removing one does not produce a fifty-percent improvement”. Dr Sidney Baker MD

You can also choose to train your child to sit still on a tack by doing months of behavioral therapy. But he will still be in pain.

It’s been 2y5m since the day Maya was diagnosed with Autism. It’s also been 2y5m since we put Maya on the gluten and casein-free diet. And 1y9m since we starting on our biomedical journey with supplements and Biomed doctors. I’m am forever grateful that our choices and decisions thus far has lead us down the path to recovery. Managed recovery for Maya was more than we could ever hope for. When first getting the diagnosis and then deciding what therapies and treatments to choose, we agonize whether it is the right choice for our children. We spend hours on research, ask the advice of doctors, professionals and other parents. But ultimately, it is our decision what we choose to do.

However, at some point, we need to stop doing research and instead apply it. The only way we can determine fully if a treatment or therapy will work for our child is to actually do it. I spent months researching on biomed, now looking back, so many wasted months. I did not need to know everything there was to know about Biomed in order to start it. Luckily, the decision to do the GFCF diet was immediate for Paul and I. We changed Maya’s diet the day she got her autism diagnosis. Right or wrong, we wanted to do something RIGHT NOW. Though the medical community keep telling us that chances of improvement is better the earlier we start intervention, but it usually takes us months just to get a diagnosis and assessment. And more months before we can start behavioral, speech or occupational therapy. But the diet was something that we can start now. Lucky for us, we saw immediate improvement.

I disagree with the current consensus that Autism is a psychiatric disorder. Because Autism manifests itself as primarily a behavioral disorder, many people tend to overlook just how unhealthy our kids are. Our kids don’t only have Autistic behaviors, there are also many physical and medical issues that are brushed aside. Many kids with Autism exhibit hypotonia, low muscle tone, inability to walk well, dyspraxia, low energy levels, some kids I know can’t even last 5 minutes before having to lie down. This to me screams out zinc and CoQ10 deficiencies at the very least.

Some kids have severe feeding issues, refusal to eat, addiction to certain foods especially cheese and milk, reflux, bloating, gassiness, diarhhia and constipation to name a few. In a neuro-typical child, the most obvious conclusion is that this is a patient with either food allergies or intolerance and gastrointestinal issues and the parents would whisk their kid to a GI specialist immediately. But when you bring in a child with Autism to a pediatrician telling them of constipation, they are told that “oh, it’s just Autism” or worse saying that the child is purposefully refusing to poop. Reality check here people, a human being, old or young is not able to mentally will himself to hold on to a bowel movement, especially not for 2 weeks! You should try it sometime, see how far you can go without a bowel movement and see how pleasant you feel during that time.

They are not pooping not because they are Autistic, defiant or trying to exert control over the parents, they are not pooping because they are medically and physically not able to. Constipation is a common malady in Autism, it could be due to many reasons. Food intolerance, inflammation, impacted stool, motility issues, yeast overgrowth,lack of digestive enzymes, Vitamin C and magnesium just to name a few. How many times have I heard “my child is not pooping because he purposefully doesn’t want to”. Have you ever considered that he is not able to? That his stool is so incredibly hard and large that it is agonizing every time he does a bowel movement? That he has been chronically constipated for so long that his bowels are chockful of impacted stool. I have seen Yasmin’s abdominal x-rays, she was literally full of shit! She was so severely constipated that it actually caused diarhhia, known as spurious diarhhia. No wonder she was acting so horribly, her tummy and bowels was in agony. I have dug out rock hard poop out of Maya’s bottom with my fingers, they were as hard as rocks! In light of this, do you STILL feel that she didn’t have a bowel movement for 5 days because it’s a behavioral issue?

If this is your child, go straight to a biomed doctor or a pediatric GI specialist right away. Don’t take Autism as an excuse, if you are constipated for 5 days, you too will act and feel horrible. Laxatives and enemas may be required, but remember that these are temporary solutions just to relieve the symptoms. You need to address the root cause of why he was constipated in the first place. We do get comments such as giving prune juice and my personal favorite “eat more fruits”. Gastrointestinal disease in Autism is a very well known fact. It goes beyond mere prune juice, fruits and more fiber. Plus, many ASD kids refuse to eat fruits and many have salicylates issue so they need to do a fruit-free diet. Maya and Yasmin was only finally able to toilet train and no longer needed to wear diapers after I addressed their health issues.

Many children with Autism have sleep issues such as inability to go to sleep easily, not able to stay asleep for long, the sleep period is too short or my personal favorite, waking up in the middle of the night. They usually wake up for 2-3 hours before going back to sleep, a few just stay quiet or play quietly. But some cry and scream for hours. And some babble, sing and laugh. For parents of children with sleep issues, you know what I mean. Our kids wake up at night every single night for months, some even years. Yes, I have been there and this was by far one of the most challenging part of our lives. Dealing with Autistic behaviors during the day time was bad enough, but having to deal with it from 2-5am every single night for 1 year was too much for any parent to bear. I still get chills down my spine when I recall hearing Maya laughing maniacally in the dark for hours on end.

Please see my previous blogs on sleep issues, the possible root causes and treatments that may help. It is treatable, if your doctor tells you “it’s just Autism” and there’s nothing he can do, then see a Biomed doctor. If your behavioral therapist says that it’s a behavioral issue and to treat it with behavioral therapy, well…. You are most welcome to spend many many nights sleeping with all the therapists in your child’s bedroom, see how far you can get. Biomed doctors understand these things, sleep disorder is treatable.

Some kids have eye stimming such as looking out of the corner of their eyes. For many kids, this is easily treatable with cod liver oil and/or Vitamin A. But please consult a Biomed doctor before undergoing Vitamin A therapy, it can lead to toxicity. Not every child requires additional Vitamin A, most cod liver oils contains Vitamin A and this is usually adequate for our kids.

If your child grinds his teeth or keeps poking their eyes, then it’s usually related to calcium deficiency. Drinking more cow’s milk or formula is not the answer, you need calcium supplementation. Also, cow’s milk is not suitable for our kids. A dentist will say teeth grinding is caused by stress, but seriously, a 3 year old kid with stress? Try some calcium and you’ll notice a difference in a few days.

Children who are always getting sick or has been on antibiotics many times, well, you have to wonder about their immune system. So do kids who NEVER seem to get sick. We are not looking to boost the immune system, we want to have a BALANCED immune system. Most ASD kids have dysregulated immune system or immune dysfunction. Vita
min D, probiotics, zinc and cod liver oil are some of the basic nutritional support for healthy immunological balance. There are many other supplements to address immune dysfunction, but it is child specific.

If your kids have been on frequent antibiotics, you must give him additional probiotics supplement. Remember, antibiotics kills bad AND good flora. The probiotics in yoghurt or yoghurt drinks are not recommended, it only gives very low amounts of good bacterias, it’s not multi-strain and most contain tons of sugar, flavorings and preservatives and not to mention casein. Frequent antibiotic usage also brings to mind yeast overgrowth, when there are no good flora present in the gut, yeast and other opportunistic organisms proliferate. Whenever I bring up the subject of yeast overgrowth with a local doctor, they give me the ‘fungus exists in our bodies naturally etc” speech. Yes, we know that, but we are talking about yeast infections or fungal overgrowth here. It is a well-known fact that yeast infections causes physical discomfort and emotional imbalance.

And when you finally manage to convince them to do the yeast test, and upon finding a positive result, some doctors even refuse to do antifungal treatment! Citing again that fungus exists in our bodies. So why is there a yeast test available in our local labs anyway? If you still won’t treat a positive fungal test, when do you ever choose to treat one? Some argue because the amount is low. Well, if it is positive, that means the amount is far larger than what is considered the acceptable control levels of yeast in the body right? Many doctors have no qualms prescribing antibiotics, but they give me a 1 hour lecture if I request for a yeast test or for antifungals.

Many parents new to Biomed, especially the ones who do not consult with a biomed doctor insist on giving Super Nu Thera. However, many children do not tolerate SNT well. Mainly because it is a multivitamin and mineral combo, many kids require specific nutrients at specific dosages. Thus a combo multivit is not suitable. I much prefer single B6 or P5P formulations. I heard that Kirkman Labs will phase out SNT eventually.

Children who are always licking things, this is usually a sign of mineral deficiencies. In biomedical, we give individual calcium, zinc and magnesium supplements. Maya stopped licking everything after 2 weeks on zinc. Yasmin stopped knocking and patting things with her hands and knuckles after a few weeks on all the minerals.

Maya stopped tiptoeing when we treated her yeast overgrowth. Yasmin only stopped tiptoeing after addressing here chronic diarhhia. Don’t even get me started on aggressive behavior due to bacterial and anaerobic bacterial infections. The improvements we see after treating infections are enormous. Our kids have nutritional deficiencies, immune dysfunction, multiple infections, neurotoxins, abnormal biochemical imbalances, metabolic issues and many more.

If a doctor gives you a lecture of how the GFCF diet or Biomed doesn’t work, I guarantee you that he or she has never been trained in biomed treatments, that they know even less than you do about Biomed. I bet the doctor has never ever recommended a patient to do the diet nor vitamins and minerals supplements. Instead, check how often that doctor prescribes mind-numbing psychotic pharmaceutical medications. I’m sure there are children where the diet and supplements did not help them and only the drugs will help. However, you will never know if your child will be the one to improve or even recover on Biomed unless you try it. Before you go straight to the pharmaceutical medications, try everything. If I listened to the 20 doctors who told me Autism is untreatable and that I should plan for my daughter’s future by putting her in a home for the disabled, I shudder to think how far gone Maya would be now. You have heard the horror stories of the abuse and even murder that goes on in these homes.

Autism is treatable. No matter how old your child is, you can always improve the quality of his life. As Dr Sidney Baker said, remove the tacks.

>The Milky Way….

Posted on November 10, 2010 by Admin

When we first started on the GFCF diet 2.5 years ago, the choice for rice milk in Kuala Lumpur was extremely limited. We could only find Pacific Rice Milk, and only in certain expatriate supermarkets. The price at RM10.90 per 1 litre box was very high, at that time Maya drank more than 1 litre of milk a day. So we calculated that we spent at least RM327 per month on just milk alone. However, some children have medical conditions that require them to be on specialised infant formulas, the price of their formulas are pretty costly too. Yes, milk is a big topic for us. Some parents are fortunate enough that their Autistic child is old enough to no longer drink milk, however many of us have young children who still demand milk from a bottle.

Eliminating casein is extremely beneficial to a child with Autism, ADHD, even Asthma and Allergies. There are many research and reports supporting the GFCF diet, please see here http://gfcf-diet.talkaboutcuringautism.org/dietary-research-in-asd.htm Also, check out http://www.talkaboutcuringautism.org, there is a huge repository of information on the GFCF diet. There are many studies and report repudiating the efficacy of the GFCF diet in Autism, but there are equally just as many studies proving the effectiveness. It is child specific, some kids show improvement on the diet, some don’t. However, it is worth your while to try the diet for a few months 100% at least once.

Many parents when first hearing about the gluten and casein intolerance, they mentioned that their child tested negative for milk allergies. This usually refers to the standard IgE mediated allergy to milk, usually lactose in milk. Yes, most of ASD kids test negative, so did my daughters. However, in Autism, we are referring to IgG mediated intolerance to casein ie. the proteins in milk. Many many children tested very high intolerance to casein in their IgG intolerance test. Before you rush off and demand the IgG test for your child, take note that most mainstream doctors are not aware of this test as it is not available in local labs. I suggest you consult with a biomedical doctor. Be prepared to do the diet, otherwise it is a waste of time and money to do the IgG test and when the report comes back positive, you still don’t want to do the diet. Don’t do the test if you are not prepared to do the work! Some kids test no or very low intolerance to casein and gluten, however they are still recommended to do the diet and observe for any clinical improvements. There are many other immunological implications to consider when an ASD child tests low intolerance.

Better yet, start the diet and observe for any improvements within the next 1 month. Casein takes 3 weeks to leave the body, however many biomed doctors say that you will not notice any improvements until at least 3-6 months. But, each child is unique. Maya showed improvement within 1 week, a few children finally slept through the night within the first 1 week of the GFCF diet. Some children show improved eye contact, less tantrums and mood swings, improved bowel function, even reduction in eczema and rashes within a few days. Some children don’t seem to show any improvements even months later. But some report that when they reintroduced casein, they notice some regression. Please see here for some success stories on the diet http://www.gfcfdiet.com/successstories.htm However, Autism is a complex disorder. Not every child will show the same amount of progress just by eliminating reactive foods. For some kids, eliminating casein and gluten is nothing short of miraculous, for other kids diet is not their main issue.

When we’re talking about Autism, you have to take into account the staggering cost of behavioral therapy, special diet, supplements, consultations and many more. The added cost of expensive milk is another burden we face. Yes, Autism is insanely costly, most families cannot afford to treat their special-needs child. Many of our kids mine included, were addicted to cow’s milk or traditional milk formulas. The purpose of introducing rice milk is purely as a substitute to wean them off dairy and casein. Rice milk in itself or rice in general doesn’t give us the same amount of nutrients that normal milk provides, it’s basically empty calories. But many children can tolerate and digest rice well, though some kids who require the Specific Carbohydrate Diet would need to drink Almond or Hazelnut Milk. One parent I know had to source for Quinoa milk as their child was intolerant to rice, almonds and hazelnut. However, hopefully as our child’s addiction to casein tapers off and when they are old enough to no longer need milk from a bottle, we can look forward to a day without buying rice milk.

One of the main concerns for parents when first eliminating milk, cheese and butter from their child’s diet is the lack of calcium. But, it’s really not a big deal because firstly, dairy milk is not the only source of calcium in a healthy balanced diet. Many Asian cultures do not have dairy cows or rear goats for milk, so where do their calcium intake comes from? In biomedical intervention, it is a standard practice to give Calcium supplementation anyway. Even for adults and children who eat and drink dairy milk products regularly, some like our ASD children experience malabsorption. Meaning, they are not absorbing the nutrients into their body. One of the main reasons for teeth grinding at night is calcium deficiency. So parents, take note. Even though we give our girls Rice Milk Enriched with Calcium, they still receive 1000mg of Calcium Powder by Kirkman’s Labs daily.

Back in the days when first starting the GFCF diet, we were limited to only 1 choice. Stock was extremely limited as well. My husband and I would scour the city looking for Rice Milk, we would also print out photos and info of certain brands of milk we wanted our favourite supermarket to bring in. We wanted to try other brands that tasted better, were creamier, had added calcium and organic. We also wanted to try Almond and Hazelnut milk.

Gradually, more choices were available. Some we liked such as Aussie Dreams Pure Harvest Organic Rice Milk Calcium Enriched. This was slightly creamier compared to Pacific and we liked that it had added calcium, though for some kids it may not be suitable as the calcium was derived from seaweed sources.

Some amazing parents take the effort to make home-made rice milk themselves. You can
even make home-made almond milk if you prefer. But when I looked at the cost of buying raw almonds, it would end up being more expensive and much more time consuming to make my own almond milk. However, the cost for rice milk may be more economical. You can find many recipe variations easily on the Net, however I personally do not have the time or patience to perfect the formulation to the right consistency that my girls would like. Also, you would need to make it daily, and I do prefer the convenience of having prepackaged rice milk.

At the moment, I have 4 types of milk at home. Having used Aussie Dreams Pure Harvest Organic Rice Milk Enriched with Calcium, we are now trying to rotate to Australia’s Own Organic. Personally, I try to use Organic whenever possible. I also bought some Hazelnut Milk primarily for cooking and baking, I love the slight nutty taste. I also stocked up on small packs of Rice Dream Vanilla Rice Milk whenever I’m at Brown Rice Paradise in Singapore. These little 8oz packs come in handy when going out, I don’t have to worry about keeping it chilled and I can just pour it into the bottle whenever needed.

Yes, they are still within the RM10-RM13 per litre range, however many resourceful parents buy in bulk directly from the distributor and get additional discounts. Some like me, I still prefer to buy from my local retailer, I have a standard order and they are happy to give us a small discount. This worked out better for us as the shop is conveniently close to our home. If we buy direct from the distributor even at wholesale prices, their warehouses are usually so far away from where I live. We would have to drive at least 45 minutes one-way just to get there. When you add up the 1.5 hour drive, the petrol, the tolls and traffic, the discount was just not attractive for us. Though I understand some distributors offer free delivery if you order RM300 and above. I also prefer not to buy in bulk, whenever I buy in too large an amount, that’s when my girls decide that they no longer like that particular brand of milk. Go figure.

Now, there are many choices available in Kuala Lumpur alone. All of the milks shown here are available in either Village Grocer in Bangsar Village 1, Cold Storage Solaris or Cold Storage Bangsar Shopping Centre. Body Basics in BSC and some Vitacare pharmacies carries rice milk too. Since I don’t buy in bulk from the distributors, I don’t have their contact details. But, be proactive and get the best prices you can.

I came across Harvey Fresh Lactose Free Milk. Please take note that this is cow milk where the lactose has been extracted. Lactose is the sugars in milk, lactose-free milk doesn’t equate to casein-free. Casein is the protein in milk, in ASD kids, we need to eliminate casein rather than lactose. Casein is present in all products derived from cows or goat’s milk. So in this instance, Lactose Free Milk is not suitable for a child on the GFCF diet. Take note that many ASD children cannot tolerate soy milk, soya bean milk or anything soy-derived. Also, Oat Milk is not suitable. Though it is casein-free, oats are not recommended for the gluten-free diet. Goats milk is slightly lower in casein proteins compared to cows milk, however it is not suitable for the GFCF diet.

In Hong Kong, I love to shop at Little Giant, the choices there are amazing. I love the GFCF canned whipped cream and especially MimicCream, a GFCF cream substitute made of almonds and cashewnuts. I use them for creamy soups, desserts and other recipes that requires cream. In a pinch, I have used coconut cream at times. Little Giant also carries EcoMilk Powdered Rice Milk. They can deliver overseas, please contact them directly for details http://www.littlegiant.com.hk/en_index.php

In Singapore, you can find GFCF ice cream at Market Place Supermarket in Tanglin Mall. Rice Dreams brand has chocolate and vanilla ice creams, it is not as creamy as typical ice cream. The Tofutti Vanilla ice cream is the best GFCF ice cream I’ve tasted so far. Please take note that many packaged and frozen foods do contain soy proteins, additives and preservatives. Depending on your child’s dietary requirements, packaged and frozen foods should be consumed in moderation.

At the risk of sounding like a broken record, please take note that most children will refuse to drink rice milk when given whole for the first time. The taste and lack of creaminess is obvious. So, the key here is gradual transition- mix 1/4 rice milk + 3/4 regular milk/formula. Once he is used to the taste, gradually adjust the mix eg. 1/2 rice milk + 1/2 regular milk. Over 2 weeks, most parents can successfully wean their child fully off dairy milk. Some kids with very sensitive taste buds needs to go even slower. A parent said that she had to mix 1/8 rice milk + 7/8 regular milk and change the ratio every 4 days. But with patience and perseverance, she managed to fully convert to rice milk within 3-4 weeks. Yes, during the transition period, they will reject the bottle at times. Yes, you will end up like me crying over spilt expensive milk. And some kids will experience withdrawal symptoms. But, please try, consistency and patience is the key.

Now in KL, you can find Pacific Rice Milk (Original & Vanilla), Pacific Almond Milk, Pacific Hazelnut Milk, Aussie Dreams Pure Harvest Rice Milk (Original & Calcium Enriched), Rice Dreams (Vanilla & Chocolate, Australia’s Own Organic Rice Milk and Freedom Foods So Natural Rice Milk. We are so spoilt for choice now, what a big difference to 2 years ago. Doing the GFCF diet is no longer as difficult as it used to be

>What To Expect During Your First Biomed Consult

Posted on November 7, 2010 by Admin

>As part of our Autism journey, we have met many people especially in the medical and special education field. Some have been incredibly helpful, many were not. And because Autism is such a complex disorder, we often have to resort to second opinions. So, like most Autism parents here, we have had many many consults with doctors and other professionals. Preparing for a 1st consult is important, not only do we sit together to discuss our child, we are also trying to size up the person sitting across from you, whether this is the right person to guide you in the journey towards recovering your child.

Apart from medical degrees and other professional diplomas, we also base it on their bedside manner, how they treat our child and us, whether they are respectful or condescending, if they have the right attitude, whether they think they know best and disregard the parents’ opinions. Most of the time, the professional that listens to the parents are usually the best for us. A plethora of degrees and certifications doesn’t impress us as much as willingness to listen and learn, being open minded and considerate. They don’t have to be my best friend, but they have to be willing to work together with me. I don’t want someone to steamroll and override me, neither do I want someone who will blindly follow my wishes and not contribute to the occasion. Though we are not medical experts, we are the experts where our children are concerned. We know our child best and a good doctor will listen and take into account your opinions and your views.

For some reason, we have consulted with a total of 6 biomed doctors in the 2 years since we implemented an intensive biomedical treatment for our 2 girls. Not to mention countless other professionals including mainstream medical doctors, naturopaths, homeopaths, psychiatrists and psychologists, behavioral specialist and special educators.

When seeing a new Biomed doctor for the 1st consult, I would prepare the following to ensure that we get the most out of the time provided. Most consults are 1 hour though some doctors require even up to 1.5 hour to 2 hours for the first consult. Though some parents initially balk at the seemingly long time for a consult, I usually find that it’s never enough. Most parents are used to very quick doctor’s visits, ranging from 5-15 minutes. Usually, the wait in the waiting room is usually 5 times longer than the actual consult! The irony is, when observing other patients in a pediatrician’s waiting room, the parents and child gets swished in and out within 10 minutes with either vaccination shot or antibiotics. Whereas if we come in and mention that we would like to put my child on the GFCF diet or do a simple fungal infection test, we get lectured by the doctor for an entire hour!

For the first consult, you must bring your child along. It usually involves a thorough discussion of the patient and family history. His symptoms and behaviors, medical history such as vaccinations, diseases, chronic medical issues and any hospitalizations. The doctor will also ask you about the pregnancy and birth. I advise you to bring all medical and psychological tests done just in case the doctor might find it useful. During the first consult, the doctor also conducts clinical/physical examination, what they look for depends on what issues are suspected during the course of the discussion. Time is also required to obtain test samples, discussing treatment options, how to prioritize treatments, regarding supplements dosages and how to go forward.

Some parents prefer to let the doctor lead the session, satisfied to answer any question posed to them. Other parents come armed with a long list of their own questions to ask the doctor. Though it may seem that the 1 hour consult is a long time, we need to use the time wisely. I suggest you do some reading up beforehand so that we don’t waste the time with simple questions such as “What is Gluten? What is Casein? Can my child eat this or that?” Also, reconsider some of the questions you may have, think whether the foreign doctor would really know much about certain obscure traditional herbs or whether a certain local dish is suitable for your child.

Do prepare a list of questions beforehand in case you forget. Communicate to the doctor your priorities, for us it was sleep and constipation, for others it was speech, for some it was aggressive behavior. Don’t forget to bring pen and notebook or, as I do, my trusty iPad to jot down my notes. During consults when my husband is not able to attend, I can easily email the notes to him. I frequently refer back to these notes later on.

The clinic will probably provide an ice pack for chilled supplements if any. But if you are not going straight back to your hotel room afterwards, or you are facing a long drive back to your home or you are flying back, I suggest bringing an insulated bag for the chilled supplements just in case of delays.

Some parents buy more than 20 supplements (which I do not recommend) thinking that they can save on a trip and delay the next consult, but in the end, the plan usually backfires. Some parents insists on getting more supplements from the doctor, thinking more is better. For me, I prefer to buy only enough supplements that I think I can safely introduce or implement within the time frame before the next consult. On average, 6-7 supplements for the first consult is a comfortable figure for me, however this is highly subjective. Some doctors do not supply any supplements at all, some parents prefer not to buy from the doctor.

Remember, please introduce each supplement slowly, keep track with a daily log, in case of side effects or unsuitability, you can quickly identify which supplements caused it. When first starting with Biomed, go cautious. We cannot predict which supplements will backfire on a child, some kids have trouble even on vitamin C, cod liver oil or probiotics, these are all basic supplements. Starting at half or even a quarter dose, I would slowly increase the amount every 3 days. However, some parents prefer to give all at once and later should any unbearable side-effects occur, they will deal with it when and if it comes. It is up to you how you wish to introduce new supplements. However, when it comes to medications eg pharmaceutical non-natutral antifungals, antibiotics, antimicrobial or antivirals, then it’s recommended to straightaway go to the full dosage.

Please check beforehand if the doctor accepts credit card payment or only cash. The consult is generally 1 hour, but check beforehand how long is the first consult going to be. I would add an additional 20-30 minutes to collect test samples if required as well as checking the supplements given and verifying the price or dosage. I suggest bringing toys, game consoles, drinks and snacks or even portable DVD players to occupy your child during the consult as well as during the trip.

Typically, the doctor would recommend several tests. However, this is not a definitive list as each child is unique, thus tests would depend on the child’s unique issues. If cost is an issue, you can ask the doctor on staggering the tests perhaps, prioritizing the ones recommended to do first etc. Also, different doctors have different preferences on what tests are required. These are the list of the common 4 tests required; however some doctors may request for additional tests depending on the child’s needs;

Basic 4 tests-
1. IgG Food Intolerance Test- this is a bloodspot, requires a prick on the finger
2. Comprehensive Stool Analysis- stool sample.
3. Organic Acid Test- commonly referred to as OATS test, need first morning urine sample
4. Hair Analysis- hair cut from the roots, minimum 1 inch long

Additional tests depending on child and doctor’s practice-
1. Urine Prophyrin- urine sample, do not expose to light
2. Blood tests – Complete Blood Count, Kidney & liver function, IgE etc.

There are ot
her tests required, but generally these are usually done at a much later stage when you are ready to implement Tier 2 and Tier 3 protocols.

Some kids are not toilet trained or non-compliant. Some kids can’t urinate or poo poo on demand so I suggest you bring urine and stool samples with you. Please collect the samples at home, bring 2 x urine, 1 x stool. Bring 1 urine sample for OATS from first morning void, if it’s too diluted it may be rejected. In separate container 1 urine taken in the dark, anytime is fine. Cover this container in foil, do not expose to light in case you need to do urine prophyrin test. For stool test sample, you must stop antibiotics, probiotics, antifungal, digestive enzyme 1 week prior. If there’s not enough time, inform the doctor and bring the complete test kit home and send it to the lab directly from home. Make sure samples are not contaminated eg stool in urine. Please fill all containers till full just in case.

Samples must not be more than 3 days old. Place in sterile containers (get from local clinic or labs) and keep in the fridge. Transport it in insulated bag with ice pack. Otherwise, get the complete test kit from the clinic, fill it up at home and courier to the labs directly. If so, you must explain to the nurse you are sending it yourself to USA from Malaysia or your country. Otherwise they won’t give you the complete test kit which also includes the customs declaration form. The Hair Analysis requires hair to be 1 inch long minimum. Please wash hair the day before with organic shampoo, as you don’t want the hair to be contaminated from chemicals, thus skewing the results. The blood draw may be required in some cases eg the doctor will advise to do kidney and liver profile test for kids with suspected liver damage.

If your child is not already on the GFCF diet, be prepared to do so as the doctor will definitely ask you to start it asap. Most doctors also recommend to go soy-free and egg-free too, even before the test results come out. In fact, you can start it now. Discuss with your doctor how often you are expected to consult and if you need to bring your child to each consultation. Some doctors prefer to see you every month, some prefer every 2 months. Commit to seeing the doctor regularly for consults, include the trip expenses into your budget. By showing your commitment to the doctor and to his protocol, the doctor too will in turn show you his commitment, often trying harder and harder for your child. I strongly suggest getting a 2nd opinion at least once a year. However, it is too soon to decide to change to a new doctor after just 1 consult. Usually, I suggest 2-3 months to see whether his protocol is suited with your child before you decide to change doctors, unless of course you have very strong reasons to dislike him or her.

I hope this helps in preparation to seeing a Biomed doctor for the first time. The information above is mostly relevant to the current Biomed practice in Malaysia, Singapore and Indonesia. The first consult is usually the most stressful I find. Even after doing many consults, I still need time to prepare before each and every consult, wanting to make the most of my face to face time with the doctor. I have learnt from each and every biomed doctor I consulted with. I wish you and your child all the best and hope that you find the consult fruitful.

>Dumb Advice and More…..

Posted on November 3, 2010 by Admin

This is a collection of the dumb advice we’ve been given, ‘famous quotes’ that left me reeling from the sheer thoughtlessness and ignorance , my observations on Autism and how I view life differently now…..

On Trying to Get a Diagnosis for Autism

Upon grudgingly admitting that Maya has many Autistic features, one famous child psychiatrist advised us to feed our daughter more ikan bilis (local dried anchovies)

The doctor who confirmed Maya’s diagnosis of moderate Autism charged us RM10,000 for a bunch of useless mainstream medical tests and took 6 vials of blood. At the next consult, she charged us a further RM500 to tell us that all the test results were normal and to give her cod liver oil.

It must have been bewildering to the psychologist when she told us Maya has Autism, my response seemed almost happy. In a way, it was a relief. For some parents, it may have come as a complete shock. But I had known for 4 months already based on my own research, but everyone dismissed me as a neurotic mother. It was a relief to know that Maya wasn’t behaving the way she was because of my bad parenting or because she was a naughty child. There was a good reason why she behaved the way she did and why I struggled so horrifically as a parent. You know what I mean.

Someone said “But she’s only MILD Autism right? That’s why she’s ok now” By the way, not that it was any of your business, but if I ever showed you her psychological evaluations and reports, Maya was diagnosed with Moderate Autism. However, in these reports, the diagnosis falls into 3 categories- Non-Autistic Range, Mild to Moderate Autism and Severe Autism. So yes, Maya fell within the Mild to Moderate range. But if she scored just 2 points higher, she would have been in the Severe Autism range. She was definitely not Mild. How I wish…..

When my hubby told someone that Maya had Autism, the response was “Congratulations! She’ll be a math genius!”

When we mentioned that our child was Autistic, the response was “Oh, how lovely….” She thought we said Artistic, we didn’t bother to correct her.

Soon after receiving Maya’s distressing Organic Acid Test results, I shared the report with someone. I tried to show that Maya has many medical conditions that needs to be addressed. The response was “She’s still young”

When trying to find out what was wrong with Maya and daring to broach the subject of Autism, the pediatrician triumphantly said “See? She’s not Autistic, she looked me in the eye just now!” Yes, Maya did look at him in the eye for about 2 seconds. But the other 43 minutes we were in the doctor’s office, Maya was shrieking, scripting, grunting and petrified.

Someone admitted to us that they thought Maya was Autistic and misbehaving because Paul and I were bad parents.

Trying to Live A Normal Life

Having to turn down a birthday party invite at a noisy kids’ play gym full of whooshing hydraulic sounds and loud guns firing little balls like a cannon, I tried to explain Maya’s Autism and auditory processing disorder. The parent said “Well, she can stay on the other side of the gym where it’s not as noisy”. She didn’t understand the sheer torture of auditory and sensorial assaults being in that environment is for Maya. Certain noises at certain decibels are unbearable to Maya, standing on the other side of the room doesn’t help. I accept that most people don’t understand about this condition, but I shouldn’t have to apologise for my child’s Autism.

When commiserating with a friend who just learned that her child MAY be susceptible to a medical disorder later on in life, she said “Oh it’s ok for you, it’s just Autism. You get to do some special education and she’ll be all right soon enough. But this is serious”. Hmmm, is this a competition on whose child has the more serious diagnosis? 3 years later, her child is still normal and has no health issues at all.

When Maya was younger, Paul slipped out that I was scared to be left alone with her. The self-righteous condescending response I got was “Hmmm, I took care of my 2 kids all by myself with no help at all” Well congratulations lady for being Mother of the Year. I was so angered by what I perceived as Paul’s betrayal, that he had exposed my deepest darkest fears. How could a mother ever admit to anyone that she was scared of her own child? Of being left alone with her own baby?

We have been shushed at and shouted at by strangers because they thought our kids were naughty, misbehaved or that we were just bad parents. Not to mention the countless stares and tsk tsk tsks….

You ever notice how freely parents talk about their child’s diagnosis, deficits and disabilities in front of their kids? They have Autism, they are not deaf. If someone discussed your faults right in front of you, imagine how embarrassing that is?

An entire planeload of passengers and flight attendants were struck dumb by Maya’s non-stop screaming for 2.5 hours and how ineffective we were at disciplining our child. People from the plane remembered us days after and came up to talk to us to give us parenting advice.

It pisses us off when we go out without our children trying to pretend we’re still a normal couple, yet other people wants to discuss Autism and showing their concern. It also pisses us off when other people don’t broach the subject of Autism at all and continue on like normal, as if they don’t care. To my friends, I’m sorry……

On Recovery

When asked why we still do biomed even though I “claim” Maya is recovered, I explained that it’s for health reasons. And that if she eats too much gluten and casein or if she misses her supplements for more than a week, then we notice some regression. Not that she regresses back into Autism, but we would notice some quirkiness or inappropriate behaviors. The sceptical response was “Oh, so I guess that’s what you mean by recovered”. Hmmm, how many recovered kids do YOU know?

Have you heard of the term “managed recovery”? That means your child has lost the Autism diagnosis, however still needs additional support in terms of diet, supplements and perhaps educational therapy.

There are many kids with asthma, diabetes, allergies and other medical conditions that are considered normal. They have special diets, take medications or supplements. But yet you won’t accept tha
t my child is ‘normal’ because she’s still on the GFCF diet and still needs cod liver oil and Vitamin C?

Did you know that recently Maya not only tested within the Non-Autistic Range, she scored higher than the average score of a typical child? She’s better functioning and more intelligent than her classmates. Yet a mainstream kindergarten teacher took malicious delight in reporting to me all of Maya’s deficits in class. When right across the room, another classmate sits crying every single day while yet another child is totally non-verbal.

Yes, one of Maya’s previous classmates in a Montessori kindergarten is non-verbal, but the school was ok with it. And yet they say Maya needs additional support and is not “normal”? Not only that, they asked for Maya’s shadow whom I pay out of my own pocket, to also aide other kids who need extra help? Either the school needs to increase the number of teachers because their staff can’t cope, or you ask their parents to pay for a shadow aide for their own child.

When hearing about how much Maya has progressed, someone said “Oh, she wasn’t really Autistic to begin with”. I mean, do you seriously think that I would make this up? That I willingly put a label on my daughter? Even before she officially received the Autism diagnosis, friends and family knew Maya as the “difficult child” being the most polite thing they dared say to my face.

When Maya started to show significant progress after years of hard work, someone said “See, who said she was stupid?” Errr…..no one did, but apparently you did

Stretching The Dollar for Autism Treatments

Others think that we’re rich, thus we’re able to afford ABA and biomedical. But I still live in the same small apartment for the past 6 years. Other people are buying new houses which are 3 times the size of my apartment.

My husband is Australian, we have family who would love to see us in Australia, we can’t even afford to have a holiday back to my husband and daughters’ birthplace. But you have a holiday with the entire family there and yet you claim to not have enough money for biomedical treatments for your child’s health?

You rock up in a chauffeur-driven luxury car and say that you can’t do biomed because it’s expensive? I downgraded my nice car to a smaller cheaper car with less airbags. We still only have the 1 car. Yet, both husband AND wife drive European luxury cars, some have 3 cars.

Treating Maya’s Autism was a necessity for us, not a luxury that we chose to afford or not. But we did chose to sacrifice many luxuries in order to afford her treatment, we chose to prioritise that over all else.

We did not get any financial assistance at all, not from the government benefits, insurance or entitlements. In other countries, behavioural therapy is provided to families for FREE for 2 years, they get subsidies and assistance. Yet they still moan about the long waiting lists and other expenses. Do you not realise what a privilege that is?

On Bowel Movements

Maya did a legendary poo that left both Paul and I leaving a posh 5 star hotel clad in a freebie sarong and towels. We changed her nappy in the bathroom, between her screaming and thrashing about, we were so filthy we had to put our clothes in a plastic bag. Luckily we managed to get a free sarong and towel from the spa.

I don’t think it’s freaky that I have an awesome collection of photos of the girls’ poos. That it’s now second nature for me to whip out my iPhone or iPad and show the doctor a photo of it.

I’m fascinated by other parents’ stories of their children’s bowel movements.

On Blood Draws

Maya’s first blood draw for mainstream medical testing took 6 adults to hold her down. Maya screamed and screamed, I lay down on the bed desperately to hold on to Maya while she trashed and struggled. Paul could barely even look. The doctor squeezed drop after drop of blood, it took 1 hour. The entire day care ward of the hospital was shellshocked by the violence of it all.

Maya’s second blood draw, which was for biomed was in the doctor’s office, just Maya, the doctor, Paul and me. By the 2nd vial, Paul got nauseous. The doctor took 4 vials of blood, by the end Paul was about to faint, turned white and squatted on the floor.

Maya’s 3rd and 4th blood draw, it took barely 3 minutes. Maya recovered after 5 minutes, especially when Daddy gave her an illicit chocolate treat.

Maya’s 6th blood draw, it was just Maya, me and the lab technician. That was an awesome day.

On Autism Movies

Autism movies pisses me off. They always get me angry, incredibly sad and they are usually non-productive to me. The lack of real info on the treatments enrages me, they only show happy smiling high-functioning kids during ABA sessions. But never show the ones where behavioural therapy did diddly-squat. The Autism parents filmed all look so freaking happy, nothing like how I usually look like most days- exhausted, hopeless and full of despair.

After watching Temple Grandin describing the 3 types of Autistic geniuses and savants in the movie A Mother’s Courage, I asked my husband which category does Maya fall into? He said the loveliest thing “She’s none of them. I don’t want her to be a genius at something. That means that she is still Autistic and we have failed”

Autism movies gets me all worked up and super critical of these documentaries more than any high-budget Hollywood blockbuster.

In Autism movies, do you ever notice how much junk food the kids eat, the nasty packaged foods the mums buy, how they load grocery carts with boxed, canned or frozen foods? How you don’t see a single fresh green vegetable bought or served? I know many children with Autism have severe feeding issues, both my kids are like that, so yes I do know how hard it is. But if you keep buying them junk food, they will keep eating them. The kids will tantrum over any little thing anyway, so why not let them tantrum over not getting their daily fix of Dori
tos and Coca Cola?

In an Autism movie, a mum with a grown adult son with Autism offers coffee to him. He didn’t ask for it, he didn’t tantrum to get the coffee, she ASKED him if he wanted coffee. When he didn’t respond, she asked him again and again!! Hello, ever heard of the effect of caffeine on the neurological function?

About GFCF Diet and Biomedical Intervention

Ever notice how most parents freely and unquestionably give antibiotics and panadol even when unnecessarily prescribed by their doctors? Yet when asked to take antifungals which the kids desperately need or remove gluten and casein from their diet, they ask 100 questions?

Apparently it’s ok to feed our kids junk food, soft drinks and candy. But we are censured for feeding them healthy, nutritious, organic meals which are gluten and casein free.

The GFCF diet is apparently unproven. But neither have they been disproven.

The GFCF diet is not an Autism treatment, it is a dietary intervention for people who have tested positive for multiple food intolerances. It may not work for every child, but it works for mine. So it really doesn’t matter to me when tv networks and newspapers report that they are useless. I know of many studies and reports on how ABA is the ONLY scientifically proven treatment for Autism, but I also know of many children where ABA didn’t work at all.

As many studies there are that prove vaccinations does NOT cause Autism, there are just as many studies proving that they DO. If you would only look……

If vaccinations are safe, why is there a special Vaccine Court?

Though many have failed in their lawsuits against pharmaceutical companies and governments for vaccine-induced injury, there are also many cases where the families are awarded damages.

Why bother to treat Autism with biomedical intervention and diet? After all, Autism is caused by genetics, and genetic diseases are incurable right? Hmmm, only 10% of Autism cases are purely genetics. What about the other 90%?

Even if you are convinced that your child’s Autism is caused by genetics, doesn’t mean that everything is genetics. Are bacterial, fungal and viral infections genetics? Are vitamin deficiencies genetics? Are chronic constipation and diarrhoea genetic? Are neurotoxicity genetic?

Genetics is a convenient label to fall back on when refusing to treat your child’s underlying medical issues. It’s just an excuse when you refuse to see that your child needs more than just neuro-psychotic drugs.

Biomedical doctors gets censured or sued all the time. So do mainstream doctors. That’s why they have massive insurance coverage for medical malpractice. Look it up.

Dr Anju Usman and Dr Dan Rossignol, the equivalent to Grammy nominees of the biomed rockstar doctors, are being sued right this minute. Dr Steve Edelson was sued by parents as well. Fast forward several years, he is now the Director of the Autism Research Institute.

I have met many doctors who do everything by the book and never gotten sued or under fire by the medical authorities. Yet, these are the doctors who have contributed the least to my child.

Just because my child had Autism, does not mean I know all there is to know about Autism. Do your own research.

As you can see, Autism affects families in many ways. Much of the devastation left by Autism is unseen, unheard and unpleasant. A lot of resentment, anger and fear resides in the soul of Autism parents everywhere. But I wouldn’t have changed it for the world, those words only made us stronger…….

>Do You Still Think It Was Easy?

Posted on November 3, 2010 by Admin

Other parents of children with Autism remark on how easy it was for us to recover Maya. They say that everything I did worked well for her. They compare their 6 month or 1 year journey and the little progress they have made with their son, to Maya’s progress. I feel that they belittle Maya’s extraordinary effort when they say that it was so easy for us. That we managed to resolve every issue so easily.

Hmmm, did you notice that within that 2 years between diagnosis and recovery, I consulted 6, yes count ’em, SIX biomed doctors in Singapore, Indonesia, Australia, United Kingdom and USA at great expense? That I faithfully travelled to Singapore every single month to consult with our primary doctor? That I NEVER EVER missed a consult? That I email and communicate with him and my other doctors on a weekly basis? That I made sure I got a 2nd opinion consult every 3 months? I badgered and harassed my doctors to try new treatments and supplements even though they said it was useless. You don’t know that I spend 2 hours on a phone consult at night with my DAN doctor in the USA? That I stay up till 3am to answer emails from supplement companies so that I don’t delay my supplement orders and shipments any longer than necessary?

I didn’t rely on just 1 doctor or just 1 lousy book to guide me in my journey. I attended 2 DAN Conferences in the US (that’s a 23 hour flight, 1 week of absence from the family and several thousand ringgit of sacrifice) and several other Autism conferences in other countries. I wished I could afford to attend the Autism One conference in Chicago or the MINDD Conference in Australia, but we couldn’t afford that. I stalked and cornered respected doctors, biochemists and famous Autism parents and bombarded them with questions. I stood in line for ages silently wishing the parent in front of me would stop monopolizing the well-known Autism expert, just so that I could ask just 1 question? I looked like a tart sitting at the hotel bar chatting up compounding pharmacists and vendors just so I could wrangle an express delivery for DMSA and MB12 without a prescription. I stayed up till 2am talking to other parents I befriended there even though I was reeling from serious jet lag and had a gruelling day of medical conferences to attend the next morning. Do you still think it was easy?

You have no idea of the time, money and effort it took trying to cook gluten-free and casein-free meals that my girls would eat. In the first 8 months of doing the diet, I didn’t know a single person in Malaysia that was doing the diet. I badgered shopkeepers and distributors to bring more GFCF foodstuffs, there was just 1 brand of rice milk when I first started, even then the stock was extremely limited. I knew of no one in my country doing biomedical then. I was flying blind and solo here. Did you know that I was so desperate to get some comrade-in-arms for biomedical that I had to start my own biomedical support group? I was scared no one would join. I initially started the group so that I could learn from other parents in Malaysia, but every one had barely just started biomed at that time and instead looked to ME for advice. Me, who myself knew very very little at that time. I’m proud to say that now, I have many Malaysian biomed friends and that I learn from them.

I basically shut down my social life so that my entire time revolves towards recovering Maya. That I have lost many many friends because of my single-minded tunnel-vision in treating Autism, my inability to give my attention to their inane inconsequential conversations, my tendency to turn every conversation back to Autism, yeast overgrowth and immune dysfunction. We had to turn down invitations out with friends and family because it would have ended in disaster for everyone. That the raw pain and anguish was sometimes too much that I can’t bear being around other normal happy families. That it physically hurt when I see their healthy normal kids playing, yet my child is screaming in the corner. Do you still think it was easy?

I devoured every book, website and forum available on Autism treatments. I stayed up till the early hours of the morning researching and reviewing Maya’s treatment plan. I dedicated at least 3 hours every single day to just research and reading up on Autism. I spend ridiculous amounts on express courier and delivery just so that Maya could get that supplement immediately. I spent an insane amount of money we barely have, digging into our savings because we spent more than Paul’s income every month. I spent a staggering RM10,000 on ABA treatments every month and an average of RM2000 every month on consults, supplements and testing. And that’s not including the cost of organic and imported GFCF food and cleaning products, the cost of the conferences, books and materials. That for every 1 supplement that gave us Wows, there were 5 others that either didn’t do anything or worse, caused immense regression. And in between all that, for every 1 step forward Maya took, she also took 2 steps backwards.

So just because in my blog, I write more about the success and triumphs, doesn’t mean there wasn’t any failures or deep hurt. You are not privy to my reality, you do not live my life. You have no clue what my family and I go through every day. It’s just that I chose not to share it with you. I choose not to tell you of every time I cried, I would hide in the closet or lock myself in the bathroom while I sobbed my heart out alone. Just because you read my blog does not mean that you know me. So yes, if you choose to see it that way, yes it was pretty darn easy.

It is not a comparison on who spends the most on Autism treatments. It’s not a contest on who attended more conferences, of who has the consulted the most number of doctors. Going to a conference or having the best doctor does not guarantee you a recovery, it’s what you do with what you have that makes the difference. It’s the effort that you put into it, the attitude you have when you go throughout this journey. On how well you treat others who only seek to help you, on the basic civilities of saying a simple thank you when someone takes time out of their busy life to give you a piece of advice.

Don’t compare your child with others, some kids improve tremendously on just the GFCF diet and a bit of cod liver oil. Some kids receive 40 hours of ABA for 3 years, full-on biomedical including chelation and IVIG, yet the progress is sadly very slow. I too get consumed by the green-eyed monster, the envy I feel when I hear a child improved immensely on just a few hours of ABA, or the child who recovered because his mother fed him peeled almonds. There will always be legendary stories, but there are also many many failures.There are no guarantees. But you still have to try. Some parents expect to receive a checklist called Things To Do When Your Child Is Diagnosed With Autism. I’m sorry my friend, it doesn’t work that way.

Don’t make your child’s Autism as an excuse for your behavior. Everyone believes that they are entitled to special treatment. How many times have I heard the phrase “But my child is Autistic!” Yes, I know that. But so was my child, so are the many other families I know. These parents who
I am proud to call my friends do this for the very same reasons that I do this. Remember that I do this out of my own time and my own money, often without my husband’s approval. He believes that I do not get the thanks I deserve, I’m sorry to say that at low moments, I agree with him. But know this, I do not do this for you. I do this for your child. For every rude or hurtful comments I get, I choose to swallow the pain and the pride because I don’t want your child to suffer because of your ignorance or rudeness. Do you think it is easy to forgive the thoughtless comments and inadvertently rude remarks? I guess I’m a good actress, that I made it look and sound so easy. But it wasn’t……..

When Maya was diagnosed, I made a pact with God. That he would help me recover my child. In turn, I will try to help other children. It is very telling that Maya started to improve and progress faster when I too started to help other families. Though my efforts are woefully inadequate compared to some inspiring parents I know, my contributions are sincere. Whether I have helped to make a difference, I don’t know. But somehow, the more I helped other families, the better Maya got. Even though Paul was complaining that I took too much time helping others and apparently neglecting my own kids, Maya still kept on improving. So, for those who think that they don’t have the time to help, know this. God will help you when you help others too. Somehow, the universe works in mysterious ways. A very good friend of mine who herself does an immense amount of charity work for Autism, said the same thing too. The more she helped other families, even at the expense of having less time for her own child with Autism, somehow he too improved. Never forget the power of karma. Good things come to those who help others.

Luck had nothing to do with it, though I try and try unsuccessfully to be humble. But we shed blood, sweat and tears to get where we are now. Maya worked so hard to get where she is. She is an extraordinary girl, who went through extraordinary measures to get to Recovery. And she will still have many challenges coming in the future, together we will get through it together.

Recovery is not guaranteed, even if you do all these and more. I have friends who are extraordinary mothers, they make the earth spin and the valleys rock with their resilience, persistence and tenacity. You know who you are, I am proud to be your friend. So, do you still think it was easy?

>GFCF Butter Cookies

Posted on November 1, 2010 by Admin

This is a basic cookie recipe that is very versatile. It is gluten-free, casein-free, soy-free and egg-free. I can only find Ogran Gluten-Free Flour and Red Bob’s Mills Gluten-Free Multi-Purpose Baking Flour in KL, either one of these are fine. However, personally I prefer to use Red Bob’s GF flour when baking as it doesn’t contain rice or corn flour. I have tried using Ogran GFCF flour and Red Bob’s Mill GF flour, both taste great but with slight difference and when I didn’t have enough flour, i’ve even used 1/2 each and it still turns out great.

For casein-free margarine, my favorite in Nutelex. I have also tried using other brands, it still works fine though Nutelex tastes closest to real butter. I have yet to experiment with Xylitol as a substitute for sugar, but feel free to try.

I make this often with both my girls, they love being part of the process. There’s lots of messes and squabbles, but there’s also lots of fun and laughter too. They help to spoon the sugar and Nutelex into measuring cups. They learn to sieve the flour, they spoon the cookie mixture into their own plastic bags and place it in the fridge themselves. They each have their own tiny rolling pins. I give them a bowl of flour each to sprinkle liberally on the work surface, on the dough and rolling pin and they are very good at it too. They choose their own cookie cutters and make sure they dip it into flour before cutting it. And decorating with the rainbow sprinkles are strictly their job. It’s a lot of fun and the girls really appreciate the home-baked goodies, especially when it’s their own creation.

As you can see below, I have listed down several variations of decorating the cookies. The options are endless. just use your imagination. Give your kids free reign, don’t worry about the mess. Don’t stress out about the kids ruining the cookies, somehow it always works out. A lot of our baking comes out wonky and lopsided and looks like the Sprinkles Fairy threw up on it, but they are always, always appreciated. I always give lots of encouragement and praises, I take photos during the baking as well as the completed cookies. They also take great pride when we go to a neighbours’ or friends’ houses to share their goodies. The girls and I will go through recipe books or websites and choose what to make.

I call these Butter Cookies even though technically there is no butter. It was originally based on my experiments with the typical Butter and Sugar Cookie recipes. However, I have reduced the amount of sugar to the point where it still retains the yummy cookie flavor without being too sweet. I have tried reducing the amount of sugar to only 1/2 cup but I found that didn’t work so well. These cookies are yummy eaten plain or decorated, especially when freshly baked. It can be stored in an airtight container for 1 week.

Butter Cookies- gluten-free, casein-free, soy-free, egg-free

Makes 24 large cookies

Ingredients

1 cup (226 grams) Nuttelex or dairy-free margarine

2/3 cup (135 grams) granulated white sugar

1 teaspoon vanilla extract

2 1/4 cups (295 grams) GFCF Flour

1 large egg or 1 heaped teaspoon Ogran Egg Replacer

3/4 teaspoon Xantham Gum (optional)

1/4 teaspoon salt

Extra gfcf flour for rolling

Extra sugar for sprinkling (optional)

Instructions

Heat oven to 180 degrees celsius/ 350 degrees farenheit

1. Sieve flour, xantham gum and egg replacer in bowl. Add salt.
2. In separate mixing bowl or cake mixer, cream the margarine and sugar until light and fluffy
3. Add vanilla, mix briefly
4. Add the flour mix and mix until fully incorporated
5. Spoon the mixture into plastic bag, and chill in freezer for 20 minutes.
6. Once chilled, roll out the dough with rolling pin to 0.5cm thickness. Dough is quite soft and sticky so sprinkle liberal amounts of gfcf flour on work surface, dough and rolling pin.
7. Dip cookie cutter into flour then cut out shapes. Place on baking tray lined with baking paper.
8. Sprinkle the cookies with sugar (optional)
9. Chill the cut out cookie tray in freezer for 10 minutes (optional)
10. Bake in oven for 20-25 minutes until golden.

Remove from tray immediately and cool on rack. Keep in airtight container once cooled.

To Decorate:

Option 1- Chocolate Dip
Melt dairy-free chocolate in a pot on low heat on the stove. Add 1-2 tablespoons rice, almond or hazelnut milk until thinned to desired consistency (optional). Add 1 teaspoon margerine so that it dries to a shiny finish (optional), mix well. While chocolate is still hot, dip the cookies halfway into the melted chocolate. If the chocolate thickens, reheat it and add a bit more milk until it reaches the desired consistency. Top with colourful sprinkles or crushed peanuts. Leave to cool on rack. Once dry, keep in airtight container in the refrigerator, store layered over baking paper.

Option 2- Sugar Glaze
Add 2 cups icing sugar and 1/4 cup hot water in a pot on the stove. On low heat, stir the sugar until melted. Add 2 tablespoons rice, almond or hazelnut milk, this makes the icing opaque. Mix well. Take off the heat. Add desired food coloring. Dip the top of the cookies into the glaze, sprinkle with decorations if desired. Leave to cool on rack. If the icing hardens, reheat it and add a bit more milk until reaching the desired consistency.

Option 3- Snow White
Sieve icing sugar on cooled cookies. Omit Step 8. Alternative, finely grind 1 stick of cinnamon with 4 tablespoons of icing sugar. Sieve the cinnamon sugar over the cookies.

Option 4- Thumbprint Jammies
Replace Step 6, 7 and 8. Roll dough into little balls. Make a little indentation in the centre with your thumb. Roll the balls into crushed nuts (walnuts, almonds, pecans or pistachios) Spoon a little jam into the centre. Bake as usual.

Option 5- Cherry Tops
Replace Step 6, 7 and 8. Roll dough into balls, roll into crushed nuts or tinned dessicated coconut. Top it with a halved glazed cherry instead of jam. Bake as usual.

Option 6- Rainbow Cookies
After Step 4, add 1/4 cup of colorful sprinkles into mixture and mix. Follow the rest of the recipe. Alternatively, at Step 8, sprinkle the cut out cookies with colorful sprinkles.

Option 7- Vanilla Gingerbread Men
Cut with a Gingerbread Man cookie cutter, place M&Ms, dairy-free chocolate bits or GFCF appropriate candy as the buttons and eyes. Follow the rest of the recipe. Alternatively, after baking use piping gel to decorate buttons and eyes.

Happy baking!

Spectrum Mum in Malaysia

We continue in our journey with recovering and preventing autism. It's all about nutrition, holistic health and natural remedies.

Category Archives: malaysia

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>Dumb Advice and More…..

>Do You Still Think It Was Easy?

>GFCF Butter Cookies

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