> It’s time to torment my big sister Last week, the teacher informed me that Maya was involved in a small altercation at school. Between the teacher’s explanation of the situation and me gently questioning Maya, it turns out that … Continue reading
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>The Misunderstood Child by Kathy Winters
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>I was immensely moved by this poem, it captured how our children feels day in and day out, yet many are not able to express it. Thank you to my dear friend for sharing this with me.
The Misunderstood Child
A poem about children with hidden disabilities
by Kathy Winters
I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different, somewhere in my mind,
And what it is, nobody knows.
I am the child that struggles in school,
Though they say that I’m perfectly smart.
They tell me I’m lazy — can learn if I try —
But I don’t seem to know where to start.
I am the child that won’t wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can’t handle most smells,
And tastes — there are few foods I’ll eat.
I am the child that can’t catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait.
I am the child with whom no one will play —
The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.
I am the child that tantrums and freaks
Over things that seem petty and trite.
You’ll never know how I panic inside,
When I’m lost in my anger and fright.
I am the child that fidgets and squirms
Though I’m told to sit still and be good.
Do you think that I choose to be out of control?
Don’t you know that I would if I could?
I am the child with the broken heart
Though I act like I don’t really care.
Perhaps there’s a reason God made me this way —
Some message he sent me to share.
For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood.
I am different – but look just like you.
>Sending Test Kits, Poop Smugglers No More!
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| Growing our own vegetables |
Doing biomedical tests are important as well as expensive. There are many ways we can economise. Many of us now face the task of sending test kits of urine and stool samples for our children’s treatment. We either send the test kits to the labs directly or to our overseas doctor. Whenever possible, always send the test samples directly to the testing speciality lab,rather than to the middle-men lab as is the case in certain Asian countries. Thus avoiding the price mark-up and the samples are fresh and gets to the appropriate labs faster. Otherwise you end up sending the urine and stool to for example, to the Singapore clinic or Jakarta lab, which takes 2 days, then the clinic or local lab then sends it out to the appropriate labs in the USA or Europe which takes another 3-5 days depending on weekends. Which means the turnaround time for your child’s precious urine or stool takes roughly 1 week to get there. Remember, there’s a small period of time which the samples are still viable, otherwise the samples would have deteriorated or rejected by the lab.
So, either you get the full complete test kit from your doctor which includes the collection vials, requisition form and customs declaration forms. Or you email your doctor to request from the lab eg. Doctor’s Data Inc to courier the test kit directly to you, this is easily done. My doctor has done this for me several times, it saves me a trip to Singapore just to pick up a test kit. DDI will email you for confirmation as well as request for your credit card details to charge you for the delivery cost one way. This costs you US$20 per test kit.
If your doctor is reluctant to do this for you, please find a sympathetic local doctor to help you order the test kit, otherwise contact DDI or their local agent (there is one in Singapore for the region) directly to ask for their assistance, they may be able to find a way to help you. Once you receive the kit, read the instructions on how to collect the samples and shipping information carefully. When in doubt, contact your doctor or the lab directly for further clarification. Then you fill in the test sample, fill in the form and courier it back to DDI.
However, in the case of the French lab Phillipe Auguste Laboratoire which is highly respected for their urine prophyrin test as well as their Organic Acid Test (OAT), you can contact them directly on their website to request for them to send you their test kit directly to you. They do not require a doctor to order them, a parent can order it themself. After you fill in the test kit, fill in the appropriate requisition form the details needed such as name of your managing physician/doctor and your credit card details. This is the same for Great Plains Lab, you can contact them directly and order the test kits yourself. They generally require a physician’s approval for US patients, however contact them for assistance for international patients.
For Philippe Auguste Laboratoire, please send the package by registered post only, not courier or poslaju. This is due to French customs restrictions. By post can take 1-2 weeks to arrive, however you can always check by email with the lab directly if they have received your shipment. Always make a copy of your requisition form so that you can provide the order or test kit number etc. Another way to check if they have received it is to check your credit card statement, the lab will only charge your credit card once they have received and are processing your test kit.
When filling in any test requisition form, please include your email address so that you too will get a copy of the test result, otherwise they will send it only to your doctor. And if your doctor is super busy, he or she may not have time to email the results to you. The turnaround time for the results to come back once receiving the test kit will vary. Depending on certain labs or tests, it’s usually 2-5 working days, it may even take up to 2 weeks. Especially when testing for clostridia or candida, it might take more time to culture. Even over the Christmas holidays, I found that they processed my test results quickly and efficiently. However, keep in touch with the lab to find out if your test results are ready, don’t wait too long idly by. I know parents who had to wait 2-3 months for their test results, when they finally received it from their doctor, they found out on the report date that the test was completed months back. So, be proactive and contact the lab yourself. We pay a lot of money for these tests and the consults, so I expect to get my test results on time. Time doesn’t wait for anyone, so even if you contact the doctor and they say that the test report hasn’t come back yet, if you think it’s an unreasonable amount of time, please contact the lab yourself. Take charge, don’t let others slow you and your child’s treatment down unnecessarily.
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| Hard at work washing windows |
For test samples sent to DDI, it requires ice packs, I would suggest including extra ice packs, more than just the small one they provide in the test kit. They cater to mostly US patients, which only takes 1 day delivery, plus their weather is quite cool compared to us in South East Asia. Thus I always include 2-3 large ice packs whenever sending to DDI. For samples to be sent to the French lab, they do not require ice packs at all.
For urine and stool samples to be sent to the USA, please use Fedex. Many Malaysian parents have discovered that Fedex are the best choice. They are used to sending biological non-hazardous materials ie. Urine and stool samples to medical labs overseas. Please contact Fedex directly www.fedex.com/my/ for Malaysian families to request for pick-up as well as delivery slips and packaging materials. You do not need to register with Fedex or open an account with them. Say goodbye to poop smuggling!
The complete test kits by the labs contains requisition forms and customs declaration forms, so if possible make extra copies of the customs declaration forms for Fedex and for yourself just in case. We have found that other courier companies in Malaysia will refuse such shipments. Many parents have wasted their time calling UPS, DHL, PosLaju and other courier companies, only to be rejected. In the meantime, the clock is ticking because we worry about the viability and freshness of the urine and stool. However with Fedex, we get no issues at all.
Apart from urine sent to the French lab, time is of the essence when you courier out your test kit to the US labs. It usually takes 3-4 days for Fedex to deliver from Malaysia to the USA. Therefor, consider what day you are sending the package off. If you send it off by Fedex to the US lab on Monday, chances are, it will arrive on Thursday, even with any complications or customs delay, it will reach by Friday. If you ship it off from Malaysia on a Friday for example,
courier companies will still ship it over the weekend so your package will arrive at the lab perhaps on Monday or Tuesday. However I prefer not to ship out a package to the USA on Wednesdays and Thursdays. Chances are, it will arrive and cleared by Customs on a Saturday or Sunday. So it will remain in the Fedex storage facility in the US over the weekend as they only do deliveries Monday-Friday. Also take note of public holidays in the US, in case the day your package is schedule to arrive on a holiday, thus meaning another day’s delivery delay, your stool and urine sample sitting in a hot warehouse with an already melted ice pack.
With hair samples, there’s not much issue. Blood spot tests are easy to do ourselves at home and will not raise too much issues with Fedex or customs. However, for tests that require blood or plasma serum samples, this will be discussed in another article.
Even if you don’t have a Fedex account, they will still accept it. You will have to pay yourself for the Fedex courier cost for international patients. The labs usually provide a pre-paid Fedex shipping docket, but that only applies to USA deliveries,. However, they are super efficient and doesn’t give you any hassles about sending non-hazardous biological materials unlike other courier companies. When you call for pickup, they usually arrive within the day to your house or office, they will ask the location you are shipping to and the estimated weight of the package. They will give you the estimate cost, however the pickup guy will weigh it when he arrives at your place and give you the exact cost. So you can then pay him in cash.
To make the tests cheaper, you can opt to omit the “recommendation” pages at the end especially for the OATS and Food Intolerance IgG. Most of those recommendations are usually not beneficial plus costs you additional money. We just need the test result and the analysis. The supplement recommendation in the OATs are to me unnecessary and inaccurate as it is based purely on that 1 test, rather than the overall biochemistry of your child. If your doctor or biomedical practitioner rely too much on the supplement recommendation at the back or base your child’s treatment protocol solely based on the OATs supplement recommendation report, then I would be wary. Because a trained and experienced biomed clinician wouldn’t depend too much on it, most experienced biomed doctors don’t even request for it for their patients as they find it a waste of money for the family. The IgG food Intolerance test also have an option to include the Dietary Recommendation, which to me is unnecessary and an extra waste of money. What is important is the test results of the reactive foods itself, we don’t need to pay extra money for a meal planner which is usually based on a typical American kid’s diet anyway.
Before you order your own test kits, please verify with your own Biomed doctor first the exact name of the test required, which labs he prefers and then reconfirm that the test kit you are going to order is the exact same thing. Otherwise you just might end up doing the wrong test and lose a lot of money and time. Remember, there are many stool tests or urine OATs test, you need to choose which one in the list is the one recommended or requested by your doctor.
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| Earning pocket money by mowing Atok’s lawn |
Now that we know there are many options on how to obtain our own test kits at more affordable prices, doesn’t mean that you should start doing random testing by ordering other types of tests other than recommended by your doctor. Financial constraints are always a concern, I believe the bulk of our budget should always go towards appropriate foods, supplements and treatment consults. Remember, tests are just a guideline. The overal treatment plan should be based on patient history, your child’s unique medical issues and your own parental observation. An experienced biomed doctor will only recommend you to do specific tests that he or she feels are necessary based on your child. Most importantly, the doctor should know what to do with the results and how to treat the issues as laid out in the test results. Otherwise you end up with a bunch of useless expensive tests and no way to go forward.
We find that in certain countries in Asia, overseas biomedical tests are imposed with huge taxes or markups, some to a ridiculous extent. Recently, I was quoted US$500 per child for a particular test via a middle-man lab. I went home, did my research and found out that I can order the test kit myself from the actual testing lab and that it will only cost me US$80! Ridiculous right?? Especially the fact that I’m paying for 2 daughters’ biomedical treatment, every cent counts. If I didn’t have my own initiative, I would have lost US$840, what a rip off!
Therefor we should take the initiative to find other cost saving measures. If your doctor or the local labs are not able to help you source cheaper options, then please join the KL Biomed forum at http://health.groups.yahoo.com/group/klbiomed/ . There are many experienced Asian parents who are very proactive and resourceful. We can all learn a lot from each other and find ways to economise.
In the US, it is customary for patients to submit the samples directly to the labs themselves and pay for the cost of the test directly to the labs, at the exact price with no additional markups. In the US, the patients even source their own supplements. For speciality compounded supplements, their doctors will send the prescription to the compounding pharmacy, and the parents deal directly with the pharmacy for delivery, cost, payment and other issues. In Asia, we are used to having the doctor spoon feed us everything from providing test kits to selling supplements. Yes it does make for convenience and I am grateful to doctors who have made things easy for me and my kids. I’m all for convenience but not when I’m being taken advantage of and paying 600% mark-up. Even with the additional delivery charges, I am still better off.
If you are on a tight budget as many of us Autism parents are, be proactive in finding other means to reduce your cost. In South East Asia, it is unfortunate that biomedical treatments are considered to be Autism treatments only for the rich. I hope to see that in the near future, biomed will be more and more affordable and accessible for all children with Autism, ADHD and related disorders. Treating Autistic children’s underlying medical conditions should be affordable and available for every child, not just for the rich.
>More Biomed Doctors in Malaysia
>I’m happy to announce our 3rd Biomed doctor in Malaysia. Dr Yee based in Melaka has been a great source of support to the Autism community especially to Melaka families. I would like to welcome him to our ever growing list of integrative biomedical practitioners in Malaysia. Dr Yee attended the ARI Conference in California in October 2010. Please see below for his details;
http://www.autism.com/pro_clinician_details.asp?c=530
Dr Yee Kok Wah
49 JCN Melaka Raya 13, TMN Melaka Raya Phone: 606-282 8088
City: Melaka | Country: Malaysia Email: Siberku@yahoo.com
I also list down the other 2 biomed doctors in Malaysia;
Sui Yin NG, MBChB, MNLP
Suite 116, 1st Floor, Medical Office Building 282, Jalan Ampang Phone: 603-42576998
City: Kuala Lumpur | Country: Malaysia
Eddie Chan, MBBS, MRCP(Edinburgh), MRCPCH(London)
16 Jalan Puteri 4/2, Bandar Puteri Puchong Phone: (60) 3-80623925
City: Puchong, Kuala Lumpur | Country: Malaysia Email: eddiecsh@hotmail.com
When choosing to work with a biomedical doctor or nutritionist, please read the introduction by ARI on the clinician registry. http://www.autism.com/pro_danlists_results.asp?International=true
Please refer to https://spectrummum.wordpress.com/2011/04/19/spring-2011-ari-conference-atlanta-georgia/ for the latest information regarding biomedical doctors in Malaysia.
>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.
>Journey Through A Vast Spectrum….
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| Maya & Yasmin after Ballet Class |
Throughout my journey with recovering Maya and Yasmin, I got to know many families and children affected by Autism. I may not have had the opportunity to give each and every child with Autism I know a hug, but I have had the privilege of listening to their stories. An Autism diagnosis covers such a vast spectrum of behaviors and features, just as each child is different, so are their families. Each child with Autism comes with a different set of circumstances on how they arrived at this journey. Each parent comes and faces the challenges that Autism brings in different ways.
Through support groups, online forums and the friendships we forge through our time in Autism, we all share our recovery journey, describe our child’s symptoms, troubleshoot each other’s therapy or medical issues, seek advice on a test report that has arrived, help getting supplements for each other, share tips and advice, compare prices, give feedback on new treatments and many more. Our children’s diagnosis ranges from Autism, whether mild, moderate or severe, Asperger’s, ADHD, ADD, PDD-NOS, GDD. Other diagnoses were a little vague eg. with some developmental delays, some behavioural issues …..you get the idea. For some, their child are ‘unlabelled’, for better or for worse, because they don’t fall under any of the current diagnostic criteria. Most of our kids here are lumped together under psychiatric, behavioural and developmental disorders, to be left to the tender mercies of the world of psychopathic medication, psychiatric institutions and behavioural therapy.
But behind the curtains so to speak, we also hear and share stories of guilt and regret. There’s a lot of self-blame going around, especially amongst parents whose children were recently diagnosed. Self-blame is an unfortunate past-time for some parents. Many parents, mothers especially harbour feelings of guilt and regret over their child’s Autism. A friend shared her regret recently, taking up too much of the blame on her shoulders. Shoulders that were already shuddering under the massive weight of responsibility that comes hand in hand with Autism. She felt that her actions were part of the blame on why her son had Autism. We hear these stories all the time, however the more Autism Warrior Parents I speak to, the more I learn that Autism is such a vast spectrum, there is no one definitive causative factor. Each and every child I hold in my heart came about to Autism through different means, many with co-morbidity. Some were early onset ie. the symptoms were showing from birth, some were regressive ie. Children with normal development but regressed or plateaud after 1 years old. Some regressed rapidly, some regressed gradually. In a small handful of families, there is Autism or a related disorder in the family tree. But majority of the children I know do not.
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| Playing tea party |
We hear regret over what happened during pregnancy such as getting dental amalgam work, eating lots of fish, working in a super stressful job, hypertension, feeling depressed, getting Rhogam shots, induced labor and other complications during pregnancy. Some were unavoidable such as having to do emergency surgery or contracting a virus during pregnancy.
There is a fair share of normal and c-section births, some mothers had complications or needed forceps during the birth, many had uneventful births. Many newborns were healthy, but some were in ICU, a few had medical complications, some required surgery at such a young age. Many children had high APGAR scores, some were very low.
Some parents regretted not breastfeeding, a few mothers breastfed for a few months then switching to formula, some breastfed their babies up till 2 years old, some dedicated mothers who had to go back to work would express milk in the office even. I know many mothers who went back to work, a few felt that it was one of the reasons why their children got Autism. Some mothers contemplated quitting their job to take care of their child full time after receiving the Autism diagnosis. Some did, but some continued on as their income was much needed. There are many households where both parents worked, some parents even have second jobs to afford the treatments. Some households have many nannies and maids to help, others had part-time babysitters but many do not have extra help at all. A few families lived with supportive grandparents. And common amongst Asian families, many live in large households with extended family members. Quite a few biomed mums felt isolated in the midst of their family who are opposed to her treatment choices. And some are lucky enough to have full support.
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| First in line for birthday cake at cousin’s party |
A few felt that because they had other children, their child was somewhat neglected thus causing Autism. I know children with Autism who were either the eldest child, the middle child or youngest child. There are families with several children, for some all are somewhere on the spectrum, I know families where the other children were perfectly healthy but with one child affected by Autism. I know of a few twins, for some only one of the twins have autism, in other families, both twins had Autism but their symptoms were on opposite ends of the spectrum. Some families have to make the difficult choice of choosing which twin to treat as they couldn’t afford to treat both children.
Many children were generally healthy, a large number like my girls were considered healthy except for frequent sore throats, ear infections, constipation, rashes, colic, frequent colds and flu, constantly on antibiotics and a few other medical issues which are generally accepted as normal by most paediatricians. Some children has asthma and allergies, and a small number have other more serious underlying medical issues.
There were children who were pre-verbal, some had some language skills. Some children were hyper-active, some were aggressive, a few were screamers, overly-friendly even with strangers, and some were self-abusive. Some children were very passive, quiet, withdrawn, some children could barely walk or sit upright for long. I know children who started therapy or treatment with little or no verbal communications, but have progressed to losing many of their stims, speaking in 5 word sentences, back to back conversation and spontaneous unprompted speech. I also know children who even with years of therapy and treatment has made very little progress in comparison to t
he amount of time, money and effort they took.
Just as our children manifest such a huge spectrum of behaviors and progress, so do the parents. There were older mums and younger mums. Some were domestic goddesses who cooked organic GFCF or SCD foods, some do rotational diets. A few mothers aren’t familiar with their own kitchens, having chefs, maids or family members who are in charge of the cooking. Yet each and every parent I know succeeded in implementing the strict diets their children require.
I know many supportive amazing fathers. Many are hands-on therapy and Biomed dads, but too many are unsung and unseen heroes who work tirelessly to ensure they could financially provide for the treatments. One common factor in all these children dear in my hearts is that they are surrounded by love and parents who would go to the ends of earth to help their kids. And a special shout-out goes to aunts, uncles, grandparents, in-laws and other extended family members who willingly roll up their sleeves and work together towards recovering their beloved nephew, niece, grandchild, cousin etc.
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| Maya at Jazz Class |
I have had the privilege of meeting many families affected by Autism of many ethnicities and nationalities; Malay, Chinese, Indian, Thai, Indonesian, Philipino, Caucasian, Central-American, African American, Afro-Caribbean, Eastern-European, Arabs and Middle Eastern. Some were of mixed ethnicities. Some were the traditional 2 parents and kids families, some were single-parents, some lived in huge communal family homes with extended family members, some were locals who receive help from family members, some were expatriates living very far away from their support network. I know a few families where one or even both the parents were doctors, yet they still face the same challenges just like us other Autism parents.
Many parents have various opinions on their causative factor or what triggered Autism in their child. The list is too long to write down, suffice to say most were varied. Some families choose one treatment or therapy, some chose a mixture of modalities. A few have to try many different therapies and treatments before they found what was most effective for their child. Some are happy with their child’s progress, but many wish it was better and faster. Treating Autism is a long journey indeed, we do not know when we will reach the destination. We cannot predict where the destination will be. For many, the journey can be very lonely and isolated too.
I have had the privilege of knowing a few families affected by Autism all over the world. There are many children I hold very dear in my heart, many of their parents have become close friends. At times, the sadness hits me like a tsunami. This happened often in the early days of diagnosis, the sadness and loneliness are now few and far between. But it still hurts to see old photos and videos of Maya and Yasmin before they were affected. If I wanted to, my list of regret would be plenty. A lot of things that I can fester in and let the weight of guilt push me down. But I won’t.
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| Maya pre-Autism |
Let go of the guilt and regret. Yes, the sadness does linger on for a long time. But don’t let your own grief disable you. Within that sadness, there are many moments of hope, joy and happiness. Perhaps one day scientific research may catch up and can isolate certain causative factors and able to identify who are at risk of Autism. There are books and articles online on how to prevent Autism.
This is one of my favourite photos of Maya before she regressed into Autism. Before the shining light and the depth of her soul in her eyes were dimmed, before she turned into a shadow of her true self. Before Autism took away so much of her joy and happiness. But now, I have a happy child full of life again. Maya is a daughter and sister again, happy, playing and joining in all the fun things that 5 year old girls do. For that I will be eternally grateful.
Please join the KL Biomed forum for Asian-based families. Get acquainted with other parents, professionals and support groups who believe that Autism is Treatable. Surround yourself with people who are supportive and positive. Establish a network of friends, manage your anxiety and stress levels (I know there’s many of you out there!), don’t be afraid to ask for help. Believe that every little thing you do counts. Not every child may get to full recovery, however you can improve the quality of their lives tremendously. So keep up the great job my friends, you inspire me with your strength, determination and resourcefulness. And remember that I hold your loved child true in my heart ……
>Holland, Italy, Beirut…..and A Transit Stop
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| 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.
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| 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.
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| 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….
>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.
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| 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.
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| 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.
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| 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……..
>Revisiting LDN and Implementing What We Learn
>When we consulted with Dr Jeff Bradstreet in November, both the girls were frequently ill. Looking at our then protocol, he advised us to stop LDN as it acted as an immune suppressant in both girls.
Looking back over my previous conference notes from Dr Jacquelyn McCandless presentation in Hong Kong last year, I realized where we went wrong with the LDN. She emphasized that the immune benefits of LDN will only work whilst on a strict GFCF diet. And as you know, we are no longer as strict nowadays with the diet. Chatting with a friend regarding LDN recently, she noticed no changes positive or negative for her child whilst on LDN. Even though she is extremely strict on the diet. Whereas I saw lots of affection and social gains on LDN but didn’t do well for their immune system. And as you know, my husband Paul was on LDN too and he too did not notice any improvements, neither did he fall ill. It goes to show, that everyone will react differently to a supplement.
It also served a valuable lesson to me, reminding me to not only research a new treatment or supplement thoroughly, I also had to remember to actually implement what I learnt. No point going to all those conferences and reading all those books if I didn’t apply what I learnt properly.
It also served to remind me that in trying to heal my children, there is always a risk associated with any medical treatment, be it mainstream or alternative. There are always side effects and interactions with other drugs or supplements. Always consult with an experienced integrative care medical doctor especially when you are doing Tier 2 and Tier 3 protocols. There are many brave parents out there who choose not to work with a doctor, many of them do well and some don’t. If you choose not to work with a medical doctor to manage your child’s biomedical treatments, then always be vigilant with the safety of your protocol and be mindful of where you get your information from. For these parents, I strongly encourage you to attend an international biomedical conference. The Autism Research Institute’s ARI Conference (previously known as the DAN Conference) in Spring will be held in April 2011 in Atlanta, USA and the Fall Conference will be held in October 2011 in Las Vegas. Please visit www.ariconference.com for more information. The Autism One conference is held yearly in Chicago in May. Please visit www.autismone.org to learn more. There are also other biomedical conferences held worldwide.
For parents who are doing Andy Cutler’s chelation protocol, affectionally known as the AC protocol, if you do not have a medical practitioner to monitor your child’s protocol, Andy Cutler is a frequent speaker at the Autism One Conference. Chelation is a Tier 3 treatment that requires care and extensive knowledge to implement safely. And please join his Yahoo Group forum.
I encourage you to join support groups, organizations and forums that believe that Autism is not just a psychiatric disorder and that Autism is treatable. I value the advise and guidance of a trusted and experienced Biomed doctor, but for those who choose not to, do make sure you know what you are doing. A reminder to myself to keep learning, remember to implement what I learnt, listen to my instincts and always prioritize safety and care when implementing biomedical treatment. For parents in Asia, please join the KL Biomed group at http://health.groups.yahoo.com/group/klbiomed/
Good luck to all the Warrior Mums and Dads out there, my comrade in arms. Though our children and our treatment methods all differ, we are all parents. We do what is best for our child, in the manner we feel is best. A couple of years ago when discussing the stress and pressure that Autism brings to the family, someone expressed their sympathy to me and mentioned the burden it must be to raise a child with Autism. My momentary bout of self-pity flew out the window immediately when I raised my head and said “My daughter is not a burden. It is a privilege to be her mother.” And since then, I have never felt regret, self-pity or guilt. It is indeed a privilege to be Maya and Yasmin’s mum.
>MB12 and Pavlova…..
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| 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.
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| 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.
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| 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….
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| 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.
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| 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.
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| 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….
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| 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.
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| 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.
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| 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.
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| 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.
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| 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….
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| 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.
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| 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.
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| 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!
>The Picky Eaters Club & Smuggling in Supplements…..
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| Feeding gluten-free bread to the cockatoos |
I belong to this club, well, my kids do. They are both extremely picky eaters, feeding them supplements are still a challenge till this day. So my membership is by default, though not by choice. Even with the GFCF diet, my girls still refused to eat the gluten-free bread so easily available in supermarkets when we were in Sydney recently. In my opinion, those breads were yummy! And the GFCF food choices available were plentiful, not just in supermarkets, but even in small cafes and food courts, as more and more Australians are lactose intolerant or have celiac disease. But even then, the girls preferred to feed the ducks, swans, geese and birds in the park with the gluten-free bread.
Many biomed parents face the difficulty of giving their children the many supplements, most of them tastes awful. Until the day my girls can swallow capsules, we’ll still find tricky ways to smuggle them in. The TACA website had lots of suggestions on how to give supplements to fussy eaters like mine. I’ve smuggled supplements into spoonfuls of food eg. rice, sandwiches, peanut butter, GFCF ice cream. Most commonly, I add them to rice milk, though it took some getting used to. I even feed them rice milk filled with supplements and feed them at midnight when they are sleeping so they are less aware of the strong taste. I even made agar-agar, but they don’t like the texture. Some supplements taste fruity so you can add to juice, fill it in a non-clear sippy cup and encourage him to drink bit by bit throughout the day. I buy fun cups and glasses, even curly straws to encourage them to drink. Our favorite was to have drinking competition, where mummy, daddy, sister, maid and Maya race to drink from our colorful cups and curly straws:-)
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| Yasmin eating rice with chopsticks |
We went out for a Chinese lunch with our Australian family recently, Yasmin gamely ate 2 mouthfuls of plain rice with her chopsticks, though Maya refused to eat anything except a few GFCF biscuits we brought along as an emergency snack. But guess what? I was so incredibly proud of both the girls, for they both sat quietly in their seats, they didn’t scream, cry, fuss or fidget in the crowded noisy restaurant. They chatted away to Grandpa and Grandma, they were well behaved and happy. And they only played with the iPad and iPhone in the last 20 minutes of the long 2.5 hour mealtime. A huge change from 1 year ago. We usually try to feed them a good meal at home before or after an outing so that we can make sure they eat enough as well as be able to get the supplements in too. It’s a bit harder to add supplements into the food when we’re eating out, also the girls don’t eat much at all so all the supplement would go to waste anyway. Though I usually fill a little pill box with a few capsules of certain supplements and label them, so I can easily add the supplements into the milk bottles when the girls ask for milk when going out.
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| Notice the broccoli… yes, she will eat it if distracted enough |
I also have other unconventional methods which would be frowned upon by parenting experts. We have all met judgemental parents who give us oh so helpful advice on how to encourage healthy eating in our kids, on how to teach them to feed themselves. I have not been successful in getting the kids to feed themselves a complete meal just yet, the best we could do is 3 spoonfuls then they run away from the table. I also find it helpful when we feed them in front of the tv or when playing a game on the iPhone. I am always offered unsolicited advice on how to encourage our kids to eat vegetables, fruits and salads. Yes, there are little kids who eat salads!! Even sushi rolls and other disgustingly healthy wholesome foods, how do these parents do it?
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| Note the girl next to Maya eating carrots and celery sticks |
One mum I met at a kids birthday party has a 5 year old healthy neuro-typical daughter who refuses to eat birthday cake, instead she was happily tucking in to the carrot and celery sticks, strawberries and rock melon!the mum has obviously done something right, but I did not want to sit and chat with her. Especially when my girls refused the fruit platter and sausage rolls, yet were begging for a 3rd helping of the birthday cake. Respect to those mothers, but this mama is sticking to spoon feeding her kids chicken rice in front of the tv. Even though my girls didn’t eat fruit and crave birthday cake, I was more proud of them especially Maya. Considering that exactly 13 months ago, she couldn’t even be able to attend a birthday party, much less make friends with the other kids, join in the games nor enjoy the puppet show. I’d rather have the Maya I have today over a girl who would eat fruits and vegetables but not able to enjoy a birthday party.
I have melted dairy free chocolate and mix with crunchy GFCF breakfast cereal and mix with supplements then fill into tiny paper cups and chill in the fridge so they look like chocolate.
You can mix into milkshakes/smoothies- mix rice milk, fresh banana and maybe strawberries and blitz it in the blender. If u have a good blender, u can even add ice cubes in, they are incredibly simple to make and YUMMY! I have made cocoa with real cocoa (not Milo or Ovaltine please!) rice milk and a bit of sugar, xylitol, organic honey, maple syrup or your choice of sweeteners. Then mix a few supplements in, though we call them Milo at home:-) Alternatively, there are chocolate flavored soy milk, even vanilla and chocolate rice milk as an occasional treat. Though soy is ideally eliminated from the ASD child diet, personally I do give them soy based treats occasionally. When my priority is to ensure they take a particular medication eg. a course of antibiotics, or additional minerals during chelation rounds, then the soy-free diet is temporarily lifted.
A sure fire way to make sure my girls finish their supp
lements is to mix it into GFCF ice cream. Singapore has different brands and flavors of GFCF soy as well as rice ice creams, in KL you can buy soy vanilla ice cream from the Country Farms Organic shop in Bangsar Village 1, only costs RM10 per 1/2 litre tub if I recall. When we were in Sydney, we found so many brands of GFCF ice creams. Hopefully through growing demand, our supermarkets will start stocking them in Malaysia. I would mix a small portion of ice cream with one or two supplements, then place into small pretty bowls and chill them for 5-10 minutes back into the freezer as by this time the ice cream would have become a bit runny. When adding supplements that are grainy into ice cream, I usually top the ice cream with some colorful sprinkles, the kind you use for baking. I usually get the girls to help with the sprinkling. Then the girls think that the grittiness or crunchy bits are sprinkles:-)I save ice creams only for certain very important supplements, not for daily use otherwise the girls get too much sugar and additives. Worse, they’ll start expecting it daily and it’s no longer a special treat.
My girls loves juice in small popper boxes, so I would usually empty out a small box of her favorite juice, then mix a small amount of juice with water and whichever supplement, mix it well, then syringe it back into the box. Usually I fill it up only 1/4 full, to make sure she finishes it. That way, she’ll ask for more juice. I save the leftover juice for another time and supplement, so the 2nd round I’ll dilute the juice again and add a different supplement in. Syringing it back into the box sounds like a long slow process, but we have done it with great success and have become quite an expert at it, it only takes 5 minutes. Using a syringe with a pointy bit works quite well when adding the juice into the tiny straw hole. You can even try it with small Milo popper box and adding your own homemade cocoa or GFCF chocolate milk, with supplements too.
Advice to parents new to Biomed- this mostly applies to members of the Picky Eaters Club:-)
Starting the GFCF diet- change only 1 thing at a time, you already know how to mix a tiny amount of rice milk with the formula and gradually increasing the ratio. Next step is to choose one other option. For example, if your child LOVES biscuits and cookies, then change that one first with a similar GFCF option. if he’s a bread lover, then change the bread. if she’s a roti canai addict, then try to make your own homemade GFCF roti canai. In the meantime, cut out the MSG, preservatives, additives, food colorings, flavor enhancers and artificial sweeteners. Doing this alone improves your child’s diet and health IMMENSELY.
Giving supplements- introduce only 1-3 supplements a week, forget about the 12 other supplements first. Otherwise the task would seem monumental and you’d be completely overwhelmed. I recommend to start with a quarter of the dosage, firstly to get the kids adjusted to the taste gradually rather than bombard them with the full strong taste. Secondly to determine any bad side effects.
Get your ABA and special education team to help- start the compliance program for taking supplements or medicine by syringe or by spoon now! If your kids are slightly older or more compliant, then get your team to teach your child to swallow capsules now. I just wished I had started sooner, who knows, it could be easier than you expected. You may not even have to resort to smuggling in the supplements, it is possible you could end up with a child who will happily swallow capsules, have faith!
Here’s a few ideas on how my girls would take some of their basic supplements-
Calcium- add to rice milk in the bottle or sippy cup. Kirkman’s Calcium powder tastes very mild, virtually undetectable in rice milk. My girls hate Kirkman’s Cal/Mag Liquid.
Magnesium- Kirkman’s Powder Magnesium Glycinate Biomax dissolves well into any liquid, if added to water it just tastes like sugar water. Contains stevia, but my girls have no issues with it. Just about any brand of Magnesium Glycinate we tried in capsules when opened are gritty and tastes HORRIBLE!
Zinc- both my kids cannot detect zinc capsules when opened and added to rice milk. Zinc picolinate tastes slightly better than normal zinc. But lately, Maya’s taste buds can detect it, so we changed to Kirkman’s Liquid Zinc berry pomegranate flavor. Can be added to juice and tastes fruity.
Fish oil- I have tried many brands, initially when both girls were milk addicts, after I have successfully converted them to rice milk, they can tolerate half teaspoon of fish oil in the milk. As long as the fish oil is added into the milk at the last minute and they must drink it immediately, otherwise the taste turns bad. For the past one year, both girls prefer Prothera Eicosamax. However, experiment with different brands, many comes in lemon, orange and strawberry flavors.
B6, P5P,B Complex and Super Nu Thera- no matter what I do, my girls hated the taste of B Complex and SNT. All of these turns milk yellow. However, B6 and P5P are slightly more tolerable taste wise. For a while, we could add tiny amounts to spoonfuls of strongly flavored foods eg spaghetti bolognese. But now, I find mixing B6 or P5P with TMG in water makes it taste like plain water! But this is only possible once we were ready to introduce TMG. Before that, I would give it in rice milk mixed with magnesium powder, provided the room was dark so the girls can’t see the colour of the yellow milk.
Probiotics- can be added to rice milk, or mixed into food, mild taste. Again, Probiotics are live cultures, so make sure the milk or food aren’t too warm. Culturelle too tastes mild and ok in milk.
Sacchromyces Bouardii- Kirkman’s S.Boulardii capsules when opened smells yeasty, makes milk slightly cream colour and slightly grainy. My girls are fine when added to rice milk. Some kids can’t stand the taste. Klaire Labs’ S.Boulardii capsule when opened are white, fine textured, dissolves well in milk and doesn’t have any strong smell or taste. This is a crowd favorite.
Medicated antifungals/ antibiotics/ antiviral- Diflucan capsules when opened and Augmentin suspension tastes fine in rice milk. For much stronger tasting medications, I would mix into GFCF ice cream.
Vitamin C- usually in tablet or capsule forms, my girls can usually tolerate it in juice, though with Maya, we usually have to keep encouraging her to drink small sips all day long.
As part of the Picky Eaters Kids Club, I have cried over spilt milk, spat out food and wasted expensive supplements. I’ve had to wipe down tables, chairs, floors, walls, furniture and even my beloved iPad when the girls suddenly spat out something where they find the taste offensive. Note to self, never ever feed them yucky supplements when playing with the iPad!
One amazing mum I know mix huge amounts of supplements into a spoonful of coconut oil several times a day, mix it to a paste and feed it to her child by force. Not only is she an amazing and determined mum, she is also a brave woman, for her child is big, strong and is known to be a biter! I nearly choked when I saw her mangled finger which was so badly bitten that she nearly lost her finger. By hook or by crook, this resourceful mother finds creative ways to stick to the strict diet and complex protocol, even when on holiday in a remote 3rd world country whilst on a house boat in the middle of a river in freezing 4 degree Celsius weather! RR, I’m proud to be your friend, you inspire and lead by example every single day.
We all have many different methods that work for our children, you too will find what works best for your child. With lots of patience, imagination and a willingness to experiment, you can find the best ways to feed the supplements to your child.
Happy New Year everyone, may 2011 be better and brighter to us all. Just maybe, by New
Years Eve next year, we’ll no longer be members of the Picky Eaters Club. Say no more to smuggling supplements by 2012, who’s with me?
>LDN, Pneumonia and Bangkok….
>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.
Spectrum Mum in Malaysia 