>Juggling Doctors and 2nd Opinions

>Many parents ask me whether I still consult with certain doctors, why do I consult with other doctors for 2nd opinions, is it because I do not trust the first doctor, how do I choose whose protocol to implement, how do I handle conflicting opinions and so on.

As you may know, both my daughters are still on biomedical treatments. Initially for Maya when she was diagnosed with Autism, and even though she has lost the Autism diagnosis, she still has lingering health issues. And Yasmin was regressing into Autism and prevented her from fully developing Autism. She is no longer at risk for Autism however like her sister, there are still medical and health issues to be addressed and monitored. Whichever doctor I consult at that time may depend on which specific issues I believe that doctor may have better expertise in.  At times, I need a fresh set of eyes to give me a new perspective in certain matters. It also depends on whether that doctor has experience in certain products or technology which other doctors may not have access to due to where they are located or their training.

If I feel that a current doctor has exhausted his bag of tricks, that things have stagnated then I know it’s time to get a new set of perspectives. Remember that different doctors have different training, experience as well as seen a different set of patients. Also each doctor has different priorities and will emphasize on certain issues and may not have the same set of priorities as I do at that point in time.

So far, I have consulted with Dr Sundardas, a naturopath in Singapore, Dr Erwin Kay, an MD from Singapore, Dr Mark Westaway, an Australian MD who practiced in the UK but has since moved on to join the prestigious TRANSCEND research team in Harvard, Dr Rina Adeline, an MD and lecturing professor in Indonesia, Dr Anthony Underwood, a Syndey based MD specializing in Autism, Dr Kyle Van Dyke, an MD in the US who is also a frequent speaker at Autism Research Institute conferences, Dr Jeff Bradstreet, an MD in the USA who specializes in Autism, a member of the ARI and frequent speaker at Autism conferences internationally and Dr Michael Beilby, an Australian MD who also trained in holistic medicine and practices homeopathy. Majority of them are Medical Doctors. I consulted with these doctors for their different expertise for my 2 daughters, both with different sets of medical diagnosis and issues. I have learnt much from each and every doctor, they have helped my children in different ways, some more than others. Take note that I don’t jump from one doctor to the next after just 1 consult, I generally stick with one doctor and his protocol for at least a few months, otherwise it would be too soon to tell if his protocol is effective or not.

Because I live in Malaysia, certain products and supplements are not easily accessible to us here. Some doctors I chose from specific countries where they can get access to certain supplements. Some doctors are limited by their own country’s health regulation as to which products or treatments they can prescribe or practice. There are certain things a USA based doctor can do which a doctor in another country do not have access to and vice versa. Also some doctors are not able to supply certain products at a reasonable cost due to high taxes imposed by their country of residence. So I look to my other doctors to supply that particular product at a more reasonable cost. Dr Van Dyke and Dr Bradstreet both have children affected by Autism, whereas the other doctors do not if I’m not mistaken. They have different outlooks in matters of practice because they have gone through what we as parents live through every day. They have experienced firsthand how Autism devastates a family. However, all the other doctors still provided the same amount of commitment and support to us even though they do not have children with Autism themselves.

I don’t find any of their opinions to be conflicting, instead I find them to be a different perspective. And that’s what I’m looking for, to explore all opportunities and try different supplements. Each doctor has their own set of preferred protocol, dosage and supplements or medications. Some protocols worked spectacularly on my girls, some were appropriate for Maya, some failed in Yasmin and vice versa.

I have experienced the utmost professionalism and commitment from all my doctors. And each one has helped us get closer and closer to Recovery. I am open with my doctors on who I have consulted with, what protocols have worked for us and what has not. And I ask their help in improving the current protocol as well as exploring other issues which may not have been covered by a previous doctor.

I thank the doctors for their commitment in treating infections and GI disorders, I respect doctors for their willingness to explore different chelation protocols, I am grateful to doctors who prioritize the girls’ immune dysfunction, mitochondrial issues and low weight gain. I cherish the doctors whose advice brought on a huge leap in progress in better sleep, wearing clothes, toilet training and improved speech. I am blessed with wonderful doctors who support me whenever I  bring up a new treatment that I learnt from a recent conference and their willingness to explore other possibilities with me. To their credit, they have never rolled their eyes at me whenever I come up with yet another hare brained scheme or whenever I debate with them over a difference in opinions. I have never been belittled for my ignorance, instead they support me in learning more about another treatment.  

I am thankful for doctors who take the time to reply to my incessant emails. I apologize to doctors who have had to pick up the pieces whenever I try a protocol that failed, yet never were we reprimanded for trying new things. I received support, encouragement, hope and sage advice from each and every doctor. Most of all, I am thankful for doctors who listen to mothers.

It doesn’t mean that we should take all Doctor’s advice at face value and follow all instructions meekly. Many parents are afraid of asking what they think are stupid questions, there are no stupid questions. If you have an opportunity to ask and learn, do it. If the Doctor’s answer doesn’t satisfy you, ask again. Sometimes, the doctor is not good at teaching or explaining, rather they are better at actually doing than teaching. I don’t look for someone to hold my hand throughout this journey, the Doctor’s job is to recover my children, not to give me a one on one biochemistry lesson.

Many doctors don’t have the time to teach us how a supplement or medication works, I would rather use the consult time to interpret lab tests, discuss patient history, work on specific issues and how to rectify them. It is up to us to learn why doing Mb12 injections are crucial even though the test reports high amount of B12 anyway. No offense to them, many doctors are better at practicing medicine rather than giving a presentation or lecture on biochemistry. Some doctors speak in medical terms, and not able to relay the information in simpler language that us parents can understand. But all that doesn’t matter to me, what matters is that they are committed to our children and that our children thrive and improve under their care. 

In my opinion, parents doing biomedical intervention should get a 2nd opinion at least once a year, ideally every 6 months if you can afford it. However, if you feel that having 2 different perspectives to be too difficult to manage and the result is a lot of confusion, then it’s best to stick to just 1 doctor that you are comfortable with. However, don’t get too comfortable or be too much in love with one particular doctor that you get tunnel vision. Open up yourselves to other opportunities and opinions, the opinions may conflict but it may open up yourself to other possibilities. 

On how to choose whose protocol or dosage to follow, I rely on the doctor’s point of views, my own research as
well as my intimate knowledge of my own child. Science has not evolved enough to predict which protocol is best for a child. It is up to us to try it out and observe for improvements or negative reactions. Report the outcome back to your own doctor and move on from there.

Some parents upon getting a 2nd opinion, get confused whose advice to follow, the first doctor or the 2nd doctor’s. Firstly, if your first Doctor’s protocol is not working, then it’s time to change to a different protocol right? Secondly, if the protocol is working, you have a choice not to follow the 2nd Doctor’s advice. However, the whole purpose of 2nd opinions in my view is to challenge me to try a new direction. If I’m afraid of change, I wouldn’t have gone for a 2nd opinion right? It would be a shame to go seek a 2nd opinion and yet you refuse to try the new treatment he suggested. Might as well have saved your money and stick to the same doctor. If you are happy with your current rate of progress, then great and stick with what works. But don’t go for 2nd opinions just because your friend did it, do it because you want to achieve something else you feel has not been addressed. Like I mentioned before, don’t do a test if you are not willing to do the work required once the results are out. Subsequently, don’t seek a 2nd opinion if you do not want to deviate from your current protocol. I do it because I know there is always something new to be explored, always a new treatment or a different protocol that we haven’t tried.

I do not recommend anyone to consult with so many doctors, I never set out to ‘acquire’ that many doctors. Some doctors were better for Maya and some doctors were better for Yasmin. Not every child will require that many doctors to get to recovery, many children thrive under the care of one doctor. However, both my girls present a different set of complexities that some children may not have. Yasmin in particular was harder to treat compared to Maya.

I chat with our Malaysian biomed doctors occasionally, I also hear from many parents on their views of different doctors. I know more and more parents who are passionate in treating their children’s medical issues due to Autism, many consult with a doctor and many choose to do it solo. For those who choose not consult with a doctor, I also encourage you to seek advice not just from one source of information. I admire their courage and confidence in going on this journey without the help of a medical doctor. I learn a lot from biomed parents, their insights and knowledge of their child’s treatments are valuable.

It’s just a matter of opportunity, and you know that I am never one to let an opportunity to pass me by. If an opportunity comes by, I grab it. Time is  too precious to waste and my children’s health are my priority. Never stop learning, whether it’s from books, other parents, health forums, conferences or doctors. Whether you chose to treat your child’s Autism with mainstream medicine, behavioral therapy, alternative treatments such as Biomed or homeopathy, with a Medical Doctor, a holistic naturopath or going solo on the advice of friends, however you choose, remember to keep moving forward. Avoid tunnel vision, explore all opportunities and most of all, ensure the health and safety of your child at all times.

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

>

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…..

>The Year of Recovery….

>

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.

>Farewell Holland, Ciao Italy…..

>

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….

>”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.