Author Archives: Admin

>Art Class and Spooky Stories. But Why??

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>Maya has been doing an Art Class with a neuro-typical girl with an independent Art teacher. Maya really enjoys it, as Ms Rita the Art teacher has taught them some wonderful arts and crafts projects. I purposely did not mention Maya’s diagnosis to the teacher, as I wanted to see how Maya would cope with a new teacher whose teaching methods were for typical kids. I was very apprehensive how Maya would react to receiving instructions and whether she could follow the class. To me, the arts and crafts they did seemed far more sophisticated than Maya was used to.

It wasn’t just scribbling here, they had to paint within the line! They had to hold the paintbrush in the pencil grip! To my amazement, Maya was excited yet calm and listened carefully to the teacher’s instructions. She followed the design layout, chose the colors she wanted, she painted and cleaned her brush and blotted it just like the teacher asked. Her artwork came out amazing. Even more amazing, throughout the class, she was chatty with her friend and the teacher. She was having fun and was totally comfortable with the whole thing.

For the past 2 weeks during ABA, the therapists have been teaching Maya how to tell a story. This is to prepare her for her Speech and Drama class at her kindergarten. “Mummy, my favorite class is Speech and Drama!” she once said. Recently, she showed us how amazing her story telling abilities were. Maya told us a 4 minute story that was full of twists and turns, totally unscripted and all from her own imagination. Everyone was blown away, luckily I took a video of it. Otherwise I myself would not have believed it happened.
Last week, Maya came home from school and told me “Mummy, I love going to outer space. I can wear a spacesuit, I can be a pretend hedgehog and be a Space Hedgehog!” When I asked her what she wanted to do in space, she thought about it for a minute. “I’ll go to the moon to get cheese and biscuits” was her reply.
She had mastered some “Wh” questions such as Where is, what is and who is. However, the Why’s have been a bit slow to come by. Recently, she started asking Why questions left and right. When she saw me giving a syringe of medicine to Yasmin, she asked me “Mummy, why do you give Yasmin medicine?” When I said it was because she is sick, Maya asked me “Why is she sick?” I replied because she’s got a fever. And Maya asked “But why does she have a fever?” By this point, I totally ignored the principles of good parenthood and instead snapped at her to be quiet and go play elsewhere.
Yesterday, my mum told me of a conversation she and my dad had with Maya;
Maya – “Opah, who are you?”
My mum – “I am your grandmother”
Maya – “Why are you my grandmother?”
My mum – “Because I am your mummy’s mother”
Maya – “But why are you mummy’s mother?”
My mum – “Errr, why don’t you talk to Atok”
Maya – “Atok, who are you?”
My dad – “I’m your grandfather”
Maya – “But why Atok, why?”
Last month, our biggest issues with Maya was her anxiety and negative thought process. She would get extremely agitated when things don’t go her way immediately or if we wouldn’t give in to her requests. When extremely upset, she would start shouting and her voice would become high pitched again. We heard a lot of “I need it, I need it!!” and “You must do this, you must!!” from her. Maya’s anxiety level was at it’s highest that we have ever observed.
Maya also started to get obsessed with dark and scary stories. All her stories would end up being about spooky forests, evil witches and monsters. She fixated on the color black and wanted to paint everything black at art class. This was very worrying to Paul and I, as her negative thought process was getting more and more pronounced. Everyone commented on it, teachers, therapists, my parents and friends. We feared that she was going down a depressive road and that she would have a tendency for depression or bi-polar disorder in her teenage years.
She started having issues with getting dressed again. She would refuse to wear clothes, instead she would huddle naked on the floor after a bath, refusing to get dressed.
We changed her Cod Liver Oil to Evening Primrose Oil as this would help with anxiety. I reintroduced TMG after a short break because we had run out of stock and this brought about another burst of language in her. And just like before, TMG also caused her to tolerate wearing clothes again. We added 5-HTP as this would help with her anxiety issues. This past week, we noticed there were less anxiety and negative thought process. She is happily wearing different clothes. A couple of days ago, Maya talked on the phone to my friend. “Auntie Sherly, I like your wedding. I like to wear wedding veil. I had a party and we ate cake. Do you like to play dress up? I like playing dress up. I can wear a wedding veil and a ballerina tutu.” I finally put a stop to the conversation and told Maya that Auntie Sherly can’t talk to her anymore and she had to put down the phone. To which Maya asked “Mummy, but why??”

>Making Up For Lost Time

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My 2nd daughter Yasmin turned 3 years old recently. As usual, we had a very small birthday party with a homemade GFCF cake. The girls had a lovely time, though Yasmin started crying when it was time to blow the candle. Luckily, her big brave sister blew out the candles for her.

For the past 1 year, our efforts have been to prevent the onset of Autism in Yasmin. Since her bout with Rotavirus a year ago, she has regressed and presented several Autistic features including physical and verbal stimming, tantrums, behavioral issues, repetitive motions, OCD traits and difficulty in transitioning. Thankfully, her language, speech and cognition has always been at age-appropriate level and has never regressed in any of these criteria.
We feel that we have been successful in preventing Autism, however we have not made any great strides in actually improving any of the issues. We are working with several doctors, however no one has been able to give us any significant or sustained progress. Health wise, our immediate concerns are her chronic diarrhea for the past 4 months, recurrent bacterial infections, clostridia, heavy metals and passive immune system. Our biggest behavioral challenges has been with her violent mood swings, temper tantrums, rages and defiance.
Yasmin is extremely bright, chatty and active. She is adorable and affectionate, she can be very loving and charming at times. But most of the time, we only saw her erratic mood swings and violent behavior. She would be cranky, whiny, crying inconsolably and throw epic tantrums. She would cry so loudly and for so long, that poor Maya would have to hold her hands to her ears to shut the noise out. She is uncontrollable when going out, she would fight us every step of the way in most day to day things such as feeding, dressing, bathing and sleep. Her non-compliance and tantrums is getting harder and harder to deal with. She hits, pushes and bites Maya even though unprovoked.
At times, I mourn for the loss of the beautiful sweet tempered child she was before. Previously, Yasmin was always smiling and happy, but in the past year, the smiles were harder to come by. Last year, there were a few months where we couldn’t find any photos of Yasmin smiling at all. It is difficult sometimes for me to feel the same level of connection with her that I do with Maya. At times, I feel disconnected from her. It is a horrible feeling for a mother to have, especially since previously we have been incredibly close.
Yasmin is an amazing girl and I love her deeply, but constantly dealing with her mega-tantrums and mood swings has stripped away a lot of the joy in being with her. These negative behaviors has overshadowed her true nature. In my heart, I know Yasmin is still the sweet, cheerful girl that was full of smiles and happiness. She brought sunshine and light into my life when we were in our darkest times dealing with Maya’s Autism. Yasmin was my bundle of fun, being with her made me feel like a `normal’ mother again, not just an Autism Mom. She was my respite into normalcy, the one I would run to whenever dealing with Maya was just too much to handle. Her joy and happiness was so tangible that she effected everyone near her. Since the day she was born till she was 2 years old, she was an oasis of calmness, contentment and joy in the midst of this family that was being torn apart by Autism. This is the Yasmin that I remember, the beautiful soul that I know is still there inside her.
The recognition I felt whenever she looked into my eyes, listening to her voice knowing that she was actually talking to ME, rather than verbal stimming was all new to me. I never realized all the joy that was denied to me as a mother to a child with Autism. Before Yasmin, all I knew of motherhood was tears and backbreaking effort. When Yasmin was old enough, I finally knew what it felt like to have a conversation with my child, rather than with a child with Autism who is lost in her own little world. The hugs and kisses Yasmin used to give and receive without pulling away from me, that was my cure for the empty space in my heart that Autism has stripped away from me.
I felt whole again as a mother. Yasmin accepted all the love I had that was previously rejected by Maya. Through no fault of her own, Maya was not capable of showing her affection nor did she welcome our hugs and kisses. We were merely the giver of milk and cookies. Whereas yasmin actually wanted to be with me, she enjoyed my company and would cry and miss me when I’m gone. Maya barely acknowledged my existence, even when I was away from her for a few days. Yasmin made up for all the lost hugs and kisses then. Though now we get it two fold from both our girls, for this we are blessed.
Yasmin’s regression was a huge loss to the whole family. Till today, I mourn for the loss of the happy little girl I remember, much deeper than when I was grieving for Maya. Somehow, the loss felt bigger. It doesn’t make sense to me either, but though I grieved for Maya when she was diagnosed with Autism, it was in a way a relief for us. Finally we had a label that explained why we struggled so much. As much as we hate the label and labelling children, it helped us to deal with Maya. With Yasmin, there is no diagnosis, no label. Just horrible behavior in a child who seems like a spoilt brat, though I know her behavior is related to the damage done by the Rotavirus and heavy metals. Many people ask why we do biomedical treatments on Yasmin, even though I try to explain, many still don’t understand. Until you have lived in our house for 1 day and had to deal with Yasmin, you will never understand. We know that once we are able to treat her gut and underlying medical issues, her true nature will emerge again.
I used to feel sorry for Yasmin, because she was constantly being rejected by Maya when Maya was deep in her Autism. She used to look up to her big sister and always wanted to play with her, but Maya was not able to be a real sister to Yasmin. Now that Maya is able to interact and play with her sister, I am saddened that Yasmin constantly hurts Maya physically. Sibling rivalry? I don’t think so. Perhaps this is payback for all the times we neglected her when all our effort was focused on recovering Maya?
We hope that in the future, both girls will have a strong sisterly bond and be each other’s greatest allies. Now that Maya is nearly recovered, I feel that she and I have made up for lost time. Maya and I have a bond that is as strong as with any mother and child. It is undeniable that we have Maya back, she is no longer lost. I hope to have the same connection again with Yasmin, I can’t wait to make up for all the times we have lost. I hope Maya and Yasmin will grow up to be sisters who are close and united, to be there for each other always.

>KL Biomed is Live & Networking

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>Malaysia’s biomedical website is now live, please visit www.klbiomed.com . The website is a resource for Malaysian parents doing biomedical treatments. You can also be a Friend of KL Biomed on Facebook. Sign up here at www.facebook.com

The KL Biomed Online Forum is going stronger than ever with more parents joining in every day. Sign up to our online forum at KL Biomed Yahoo group

Please forward these links to anyone you feel may benefit from biomedical intervention for Autism Spectrum Disorder, ADHD, PDD-NOS, Aspergers, Apraxia and other related disorders.

>Favorite Subjects at School

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We are gradually transitioning Maya into a mainstream kindergarten for the past 2 weeks. Together with a shadow, we started Maya for 1 hour a day every day at the new school. Meanwhile, Maya still gets at least 5 hours of intensive ABA everyday. She immediately liked her new teacher and she has enjoyed every new experience. So far, she has done a science experiment, a music and dance class, a speech and drama session, learnt Mandarin in school and gone on a field trip with her classmates.

In the past 1 week, Maya has mastered writing her name, day and date on top of her worksheet. Maya has learnt to write her name a long time ago, but she only learnt the days of the week and month only a few weeks ago with ABA. She learnt the names of the day and month, but she has never learnt how to write it down. We have not taught her how to write numbers either. Initially, she needed a bit of prompting writing down the date, but once she learnt how to look at the blackboard and copy the words and numbers down, she is doing well.
Writing is a difficult task for her, her fine motor skills are still something we are working on. She surprised me a few days ago when I asked her what day it is. She said “Today is Thursday” and I asked her to write down the word. There was no prompting or visual guide, yet Maya was able to write and spell it correctly. We are also working on reading during ABA, she can sight-read quite a few words already, mostly 3-4 letter words.
She communicates well with all her teachers and happily takes part in all the activities. She interacts well with the other kids but she has yet to make a best friend in class. She raises her hands to answer questions and always gets the answers right. She loves going to the school library and borrowing a book. Maya is compliant with wearing the school uniform and socks everyday, even the PE uniform which is a round neck white tshirt and plain red shorts. As you may know, this is not an outfit that Maya would ordinarily want to wear.

Last week was Maya’s first exposure to science and she learnt about soluble materials. She listened to the teacher’s instructions and carefully did her experiment without any help from the shadow aide. She was extremely excited and told me all about it after school “Mummy, I made a soluble!”
Maya has always loved music and dancing, but as this was her first time with a new music teacher I was naturally apprehensive. There were also more children there, the acoustics of the room was louder and more echoey and the format was different. I peeked in and saw Maya happily joining in on the fun, dancing around the room with the other kids, waving a handkerchief on a stick in time to the music. Later on in the car, Maya said to me “I did a handkerchief dance, Mum! The music teacher’s name is Ms ****”
The school had organized a field trip for Maya’s class to the fire-station. We were keen on Maya joining in all the activities and our ABA team helped prepare Maya for this big adventure. As much as I wanted to expose Maya to the real world, I was still apprehensive about the school trip. She had never been anywhere without us before apart from with her grandparents. She would be going on a big schoolbus with 25 other kids. Even though she will be accompanied by her shadow aide, I worry about the strange environment, the many kids and the fact that Maya had never been on a bus before. Also, she has had a lifelong fear of men, we were not sure how Maya will react to the firemen.
We were told that Maya really enjoyed the bus ride and the singing with the other kids. She made immediate friends with other girls that were in the other class (same age group, but different class). She listened carefully to the fire safety lecture by the fireman and watched a demonstration of the fire extinguisher. She did not want to climb on the fire truck but most of the girls didn’t, mostly the boys did this. She didn’t want to try on the fire helmet either, but neither would I, who knows how many sweaty smelly heads it’s been on!
When the firemen demonstrated how they slide down the pole, she told one of the fireman to do it again! And she also tried out the water hose with a little bit of help from the friendly fireman. It was hot, noisy and strange and my daughter took it all in stride. Not only did she conduct herself well, she also enjoyed herself. It was a big big milestone for us, words cannot express how proud we are of Maya.
Today, we extended the school time to 2 hours. It was her first time with a new subject, Mandarin. The school has a multi-lingual curriculum, English is the primary language however there is a Mandarin class every day. There are always 2 teachers in the class, one who speaks and teaches in English and another teacher who only speaks in Mandarin. However, for students whose parents do not wish to emphasize on Mandarin language skills, the school has a more relaxed policy for those kids.
There is also a Bahasa Malaysia class 3 times a week, but we will introduce Maya to that a little bit later as the time of the class is not suitable right now. A year ago, Maya could barely even speak English, now we’re introducing her to a 2nd language and soon a 3rd language! Even though Maya is half-Malay, I have never spoken to her in my mother tongue. Unfortunately, due to her language delays, it was better that we only speak in one language so as not to make it harder for her to learn how to speak.
However, because we live in a multi-cultural city, Maya has been exposed to many languages. She hears me talking in Malay to my parents, our maid speaks Filipino to her friends, we hear Chinese and Tamil spoken on the street every day. One of the many joys of living in multi-lingual Malaysia, many of us speak 2nd and 3rd languages. So I assume that she won’t be fazed by a strange language. Right enough, Maya really enjoyed Mandarin class. She has excellent intonation and could pronounce all the words really well, said her teacher.
Our immediate goals now will be to extend her school hours till she is able to attend the full session everyday. And gradually we will phase out the shadow aide. Our ABA team has done a wonderful job preparing Maya for this big transition. They continue to support us daily by brushing up on skills that Maya has never been taught before yet are essential in a typical school environment. A comprehensive ABA program combined with intensive biomedical treatments have brought us here, we are closer and closer to recovery every day. For a child who was diagnosed with Autism 1.5 years ago, Maya is definitely proof that Autism is Treatable. There is always hope of recovery.
In Speech and Drama class last week, all the kids made a little speech about what they did during the holidays. Maya listened carefully to all the other kids’ stories and listened to the teacher’s instructions. Her shadow aide did not prompt or assist Maya in her speech, all she told Maya was that soon it will be her turn to make a speech. When it was Maya’s turn, Maya talked about our holiday in Sabah, how we all played and swam in the pool and when we saw the orangutans! It was all unprompted and completely accurate. Her class teacher, the drama teacher and the shadow aide were there and they were amazed by how eloquent Maya was.
Later that day, Maya told me “I made a speech today, Mum! Ms Lizzie is my favorite teacher!” We went to Sabah in December, 2 months ago. It was gratifying to know that the effort and cost of going on family holidays was memorable to our little girl. I pray that she has many h
appy memories stored away in her mind, hopefully one day she will tell us all about it. I hope we will continue to fill her memories with good ones, may the bad ones be long forgotten in her mind.

>Which Probiotic?

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When choosing a broad-spectrum probiotics, it is best to get one with multi-flora rather than single strain. The refrigerated kind are recommended rather than on the shelf. However, even if you do purchase unrefrigerated ones, do store it in the fridge at home to maintain freshness and potency of the live cultures. As most ASD kids are on the GFCF diet, make sure that your probiotic is a casein-free source. Most probiotics are cultured on dairy unless stated otherwise. Specialist GFCF probiotics do cost more however it is worth spending extra money on a quality probiotic.

The usage of probiotics in biomedical intervention Autism Spectrum Disorder is one of the first few supplements to start your child on. The benefits are too many to write here, please see Dr Kurt Woeller’s blog on the benefits of probiotics here http://drkurtwoeller.blogspot.com/2009/06/probiotics-growth-promoting-factors.html


Here are some of the probiotics that I have tried;

1. ProBio Gold 20 Billion CFU multi- we initially used this, it made a great difference because my girls were really low on beneficial bacteria. But after extended use, it doesn’t seem to be as effective and cause constipation for my girls. Contains 4 types of Lacto, 1 type of Bifido and 750 million CFU strep


2. Klaire Labs Therbiotic Complete 25 Billion CFU- contains more strep than Probio Gold but seems to be better tolerated mainly because it has more Bifido strains (Probio Gold only has 1 bifido type) Contains 7 Lacto strains, 4 Bifido strains and 1 Billion CFU strep.


3. Klaire Labs Therbiotic Detoxification Support 50 Billion CFU – high potency probiotic (not broad spectrum) specific for detox support. Has 2 types of lacto and 1 Bifido.

4. Klaire Labs Therbiotic Factor 4 10 Billion CFU- contains only Bifido (4 types). As an add on formula for those who require extra bifido especially helps with constipation.

5. New Beginnings Probiotic Support Formula 20 Billion CFU – multi-strain probiotic with added S.Boulardii. No strep included, contains 4 Lacto strains and 2 Bifido strains and 2 Billion CFU S. Boulardii. It ships out from manufacturer without refrigeration, however recommended to store in the fridge. GFCF compliant.

6. Three Lac – this is a proprietary blend of probiotics and other ingredients, usually used as a natural treatment for anti-fungals. However, it did not have much effect on my girls.

7. Culturelle – contains Lacto GG, good to kill clostridia in most kids. It is very effective in keeping clostridia from recurring. Though it contains very minute amounts of casein, it is generally beneficial to most kids.

8. Sacchromyces Boulardii – it’s a probiotic type of good yeast, that fights the bad yeast.

9. Klaire Labs Biotagen- this is a prebiotic, it encourages implantation of good probiotic as well as natural regrowth. Some children may not be able to tolerate this formulation due to it’s effect in raising sulfur levels, this is child specific.

All of the probiotics have been helpful and effective in some manner with my girls. There is no real favorites here as rotating it seems to work best for my girls. Currently we just started using New Beginning’s Probiotic, there doesn’t seem to be any amazing improvements, but neither is there a bad reaction. Most kids are ok with strep strains in the probiotic blend, however this is child-specific. For my girls, it seems that continued use of Probio Gold and Therbiotic Complete has built-up the strep levels to the point where it affected them, usually tummy ache, constipation, irritability etc. The strep strain here is Streptococcus Thermophilus which is actually a good probiotic, but some children may not be able to tolerate prolonged dosages of it. When first starting biomed without a DAN doctor, you can choose Probio Gold as it is GFCF, has a good range of probiotic strains, it is high potency and it is easily accessible from our specialist retailers in Jakarta and Singapore or to purchase online. 20-25 Billion CFU is a good amount for ASD kids. However, if your DAN Doctor carries a range of Klaire Labs products, then I would recommend Klaire Labs Therbiotic Complete. Klaire Labs products can only be ordered by a doctor, if your DAN doctor does not carry this or if you do not have a DAN doctor, you can try to persuade a local doctor to help you order this from http://www.klairelabs.com directly. However, if you suspect that strep might be an issue, then please find alternative types.

It is recommended to rotate probiotics, by rotating I mean finishing 1 bottle, and for the next bottle to purchase a different type. Not rotate on a daily basis. I would not recommend New Beginnings Probiotic for beginners to biomed as your child may probably not be ready for anti-fungals just yet. However, once you are ready for anti-fungal treatment, then you may try this. Again, this is dependant on whether your child can tolerate S.Boulardii. For higher potency probiotics – VSL#3 is a very high potency multi-flora formulation usually to treat severe gut issues such as ulcerative colitis and Crohn’s disease. It is also beneficial for those diagnosed with Inflammatory Bowel Disease and with high oxalates. Please use this under the supervision of a medical doctor.

There are other probiotic in the market, do not limit yourself only to my list. There is no perfect probiotic that I’ve found (so far) it’s best to rotate and observe which ones is more suitable for your child. Probiotics is high on my list of essential supplements for both my girls.

>Frequently Asked Questions

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This is a list of questions that parents new to Biomedical Treatments for Autism frequently ask me;

1. Which DAN doctor should I see?

I would recommend either Dr Erwin Kay in Singapore (www.kcsmed.org/autism) or Dr Rina Adeline in Jakarta (www.kibm.org) Both are qualified medical doctors, both come highly recommended by me and other parents currently doing biomed in Malaysia. How you choose depends on your personal preference. Take note that this is not a 1 time consult, you should commit to seeing the doctor for a consultation either once a month or bi-monthly.

2. I want to do biomed. How do I start?
Step 1: Start the GFCF diet, soy-free and egg-free
Step 2: Make an appointment with a DAN doctor immediately
Step 3: Start reading up on basic biomed.
Step 4: Start a Daily Log – keep track of all food, supplements, sleep habits, bowel movements, mood, behavior etc.
Step 5: Consult with a DAN doctor. Expect a comprehensive consultation, the Doctor will start your child on Tier 1 supplements and will advise you on what lab tests are required.

3. Where can I find information regarding biomedical?
These are 2 websites and 2 books I would recommend for beginners to biomed.
Recommended websites:
Recommended books : You can buy both from Kinokuniya online bookstore. They deliver straight to your doorstep within 3 days for only RM8.00 http://bookweb.kinokuniya.co.jp
1. Healing the New Childhood Epidemics by Dr Kenneth Bock ISBN: 9780345494511 RM63.90
2. Healing And Preventing Autism by Jenny McCarthy & Dr Jerry Kartzinel ISBN:9780525951032

4. What is the GFCF diet and why is it so important?
The Gluten-Free and Casein-Free diet is commonly known as the GFCF diet. It is the foundation for future biomedical treatments. Some children show immediate improvement once on the diet, some children do not seem to show any improvements. But please do it 100%. It usually takes 1-2 months to implement the diet. The GFCF diet does not recover your child from Autism,the GFCF diet alone does not constitute biomedical. Please check out this website for more info on the science behind the GFCF diet. FYI, soy milk is not a good alternative, Rice Milk is considered more acceptable for most ASD kids.
Avoid all milk products (cow and goat) including milk, cheese, butter, yoghurt etc. Avoid gluten which is wheat, oats, barley and rye. Please sign up to the KL Biomed forum to learn from other Malaysian parents where to purchase or how to make alternative foods.

5. Where can I do testing?
Many parents who first hear about biomedical are keen to do the basic 4 tests that we commonly talk about. However, I strongly encourage you to have a consult with a DAN doctor first. Based on the consult, the doctor will recommend you as to the appropriate tests for your child. It is not the same across the board, each child has a different set of medical issues. Thus it makes sense that the testing requirements may differ. I strongly suggest you do the tests with your DAN doctor. Only do the tests and spend the money on it if you are prepared to do the Doctor’s recommendations after the results are out. No point doing the IgG food intolerance test if you are still unsure whether you want to do the GFCF diet. No point doing the Comprehensive Stool Test if you are not prepared to do the work repairing the gut.

Also take note that these tests are expensive, they are sent to specialized labs in the USA and Europe. It is not available in local labs. I caution you against doing cheaper and simplified tests that are similar. Based on many parents feedback, this usually ends up costing more money and wasted time because eventually they find that the tests are not comprehensive, are missing some vital test values and inconclusive. Thus they have to spend more money redoing the test with the correct labs. Tests for biomedical in ASD based on the DAN and ARI protocols are usually from Doctor’s Data, Metametrics, Great Plains Lab, US BioTek, almost all in the USA.

I do NOT recommend you ask a non-DAN doctor to do these tests, even though you manage to find the names and labs of the tests that your friends have done. Remember, if the doctor do not know about those tests from those labs, they do not know how to interpret it, they do not know how to properly obtain samples for it and they may end
up ordering the wrong tests even though it’s from the correct labs and they do not know what to do with the results afterwards. You may end up wasting A LOT of money on doctors who are not experienced with it. They MAY be able to get you the correct tests, but do they know how to interpret it and remedy the problems?

6. What is a DAN doctor?
DAN stands for Defeat Autism Now!. A DAN doctor is a doctor who has attended a clinician’s training at the DAN Conference in the USA. The DAN conference is held several times a year by the Autism Research Institute (ARI). A doctor who has not been to a DAN conference and training will not have the knowledge necessary to do biomedical treatments. There are now more and more doctors who are aware of biomedical treatments, however in order to ensure that an effective biomedical protocol for your child, please consult with a DAN doctor. You can refer to this website for lists of DAN doctors worldwide http://www.autismwebsite.com/practitioners/foreign_lc.htm

7. Are there supplements that I can start without a DAN doctor?
Although I highly recommend that you only start on supplements prescribed by your DAN doctor, most parents are really eager to start on them. There are supplements that you can start safely now. This is a list of Tier 1 supplements that is commonly required by most children with ASD. However, due to the fact that each child has their own set of unique medical conditions, please take note that however `safe’ a supplement might be, you run the risk of side-effects. Therefor you should only take supplements and medications based on your doctor’s advice.

This is just a general guideline and not to be construed as medical advice. Please take note that you should always start the GFCF diet first. The list below is the daily recommendation appropriate for a child weighing 13kgs and the product I give my children:-
1. Vitamin B6 P-5-P – Kirkman’s, Brain Child Nutritionals and New Beginnings all have their own formulations
2. Vitamin C – 1500mg
3. Calcium – 1000mg – Kirkman’s Calcium powder
4. Cod Liver Oil – 5ml (free from mercury source, either Kirkman’s or Nordic Naturals)
5. Zinc – New Beginnings Zinc Picolinate 25mg
6. Magnesium Glycinate – 300mg – Kirkman’s Magnesium Glycinate Powder BioMax series
7. Probiotics – 20 Billion CFUs (dairy/casein-free source) – Kirkman’s ProBio Gold
8. Digestive Enzymes DPP-IV formulation – Kirkman’s EnzymComplete DPP-IV
9. Digestive Enzymes for phenols, oxalates & salicylates – Kirkman’s Phenol Assist
10. Epsom Salts baths – 1 cup of Epsom Salts dissolved in warm water, soak for 20 minutes
11. Reduced L-Glutathione Lotion by Kirkman’s – apply 5 grams daily to back of the neck

These are the basic supplements that I am comfortable recommending to my friends. I would not do any other supplements or treatments without the guidance of a DAN doctor. Again, start with a 1/4 dosage and slowly work your way up. Always introduce 1 supplement at a time.


8. Where can I buy these supplements?
They are not available in pharmacies or hospitals in Malaysia. We usually purchase them from our DAN doctors, trusted retailers in the country that your DAN doctor resides in or online from the US. All of the above can also be purchased at www.spectrumsupplements.com, they can deliver straight to your doorstep. There are other websites, please check if they can deliver to Malaysia. Please take note that due to Malaysian customs regulations, there may be delays or you may be questioned by customs officials. It is also best to order it yourself and not `tumpang’ with your friends as these are supposed to be brought in for personal use.

9. I think my child is healthy. Why do I still need to do biomed?
A child with Autism Spectrum Disorder may look healthy, therefor we think it’s JUST a behavioral problem. Once you start reading about biomedical treatments, we understand that our children have multiple medical issues that needs to be addressed. By treating these individual medical problems, you gradually find that your child’s Autistic behaviors decrease, speech and language improves and his moods are better too. He can concentrate and learn better from the behavioral therapies and special education classes we send him to. Remember, a healthy body is a healthy mind. You will never know if biomed will help your child until you actually try it. BTW, `trying’ to do GFCF diet doesn’t consist of biomedical. Giving your child some vitamin C and cod liver oil is not biomedical. Biomedical treatment means an intensive and comprehensive protocol based on a trained doctor’s guidance using specialized supplements.

10. I have read the books & websites and I want to start biomedical treatments. I want to start on chelation now!
Most parents when they first start biomedical intervention and learn about the damage caused by heavy metals, they feel an extreme urgency to get rid of these horrible toxins in their child’s body. Especially when they see the results from the Hair Analysis, they want to get rid of the mercury and lead NOW! Chelation is the process of detoxification of heavy metals from the body. This is not the first treatment to start, there are many protocols to go through before the body is ready for chelation. Many children recover without even having to go through chelation. It is very child specific. For most children, you should treat the gut first. You need to repair leaky gut, treat fungal, bacterial and viral infections, address immune deficiencies, replenish essential vitamins & nutrients, repair the sulfation pathways and methylation cycles and many more before you are ready to start chelation. Chelation is advanced biomedical that should be done with caution with the care of an experienced DAN doctor. Always remember, treat the gut first.

11. How much does it cost to do biomedical?
Usually, expect to spend RM5,500 – RM6,000 for your first consult with a DAN doctor. This usually includes the price of the consultation, Tier 1 supplements and 4 basic tests. Again, this is based on the average cost. Depending on your child’s unique medical issues, it can be lower or higher. For subsequent months, expect to spend between RM500 – RM1,500 per month for supplements. There may be further tests required, however the earliest you can expect to do so would be within 6 months if you are doing intensive biomed. Please make sure you budget for travel expenses for regular monthly or bi-monthly consults. Do not skimp on consults, no point doing all those expensive tests and buying those supplements if you do not consult with your DAN doctor regularly.

At first glance, it seems expensive. However, this is an investment in your child’s future. With an intensive and effective biomedical treatment, this may mean that the overall cost of therapies for your child is for a shorter period. Rather than spending x amount of monies on specialised expensive behavioral therapy for 6-10 years, you may find that biomedical has made it possible to bring your child so close to recovery if not completely within 2 years. In the long term, 10 years of behavioral intervention and cost of caring for an Autistic adult is far greater compared to doing biomedical for 2 years. Up until recently, parents of children diagnosed with ASD is expected to care for our disabled children for their entire lifetime, with no hope of recovery or a chance for a normal life.

12. My child is older and behavioral therapy has helped him. Will biomedical intervention still help him?
Biomedical treatments will help any child, young or old. Of course, children who receive biomed treatment before 6 years old have the greatest chance of recovery, the younger the better. The same can be said for behavioral therapy too. However, every child will improve significantly if you treat his health issues. It may not promise complete recovery, however you are giving your child every opportunity he deserves. He deserves good health just like any other child. You owe it to your child to ensure that he has a good diet, he gets all the essential nutrients, vitamins and minerals, that any gastrointestinal disease is treated. Your child needs you to understand that he cannot talk because the toxins and the damage in his body is preventing him from talking. He needs you to understand that sometimes he experiences pain in his tummy or his head and that is why he sometimes causes injury to himself because he is trying to relieve his pain.

He needs you to know that he tiptoes or flaps his hands or moan out loud not because he likes it, it’s because he cannot control his body. Please understand that tiptoe walking should not be remedied by putting your son’s legs in a plaster cast. Usually, toe walking will resolve on the GFCF diet as well as doing yeast treatments. You need to realize that if he has hypotonia or weak muscle tone, exercise alone will not help that. You need to consider that it may be caused by zinc deficiency and most commonly hypotonia is caused by a mitochondria disorder and that there are supplements to help with that. If your child refuses to eat, you need to understand that it is a serious medical condition, not a behavioral issue. Severe feeding issues indicates severe gastrointestinal disorders, you need to take your child to a doctor now! If not a DAN doctor, then to a pediatric gastroenterologist. You need to understand that it’s not `just’ hypotonia or just a feeding issue. It has other far reaching health implications. These are issues that a DAN doctor deals with every day. No matter what his age is, he deserves the best medical treatment you can afford, just like any other child with a disease or medical condition.

13. Your daughter is almost recovered now, but she wasn’t that Autistic to begin with. She was just Mild Autism right?
Maya was diagnosed with mild to moderate Autism. Even though her chronological age was 32 months, her developmental and mental age was that of an 18 month old child. Based on her psychological assessment, Maya was developmentally delayed across the board and was considered Low Functioning. Her ATEC score was 100 when she was diagnosed. No, she was not a mild case. However, her progress has been tremendously fast not because she was an `easy’ case. She had many debilitating behavioral issues and a multitude of medical concerns. However, with the help of trusted DAN doctors and extremely hard work, she has improved amazingly. Biomedical intervention can help mild, moderate and severe Autism. Whether we can achieve compete or only partial recovery, remains to be seen.

I highly recommend you sign up to the KL Biomed forum for localised Malaysian information. There are many Malaysian parents doing biomedical here in Malaysia. It is a good site for information on local biomed resources. As parents of children diagnosed with Autism, we all hope that all the biomedical treatments and behavioral therapies we do will make a significant improvement in our children. By doing both, my daughter has exceeded our expectations.

Maya is curre
ntly interested in weddings, she loves looking at my wedding album as well as wedding pictures from my celebrity magazines. She truly enjoyed going to a wedding recently, even though the noise and crowds bothered her, she was still able to overcome the difficulties and enjoy it. She has insisted on choosing pretty white dresses recently and loved the little veil I bought her. Looking at her wearing her white dress and little veil proudly, I hope to one day attend her wedding. I look forward to seeing her grow up into the lovely sweet girl that she is, for one day I hope she too will lead a full life, fall in love, get married and have children of her own. Whatever her future may be, I am proud of her. Every day, Maya gives me inspiration and strength to go on. She is indeed my angel.


>Bathrooms, Big School and Uniforms….

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Every little milestone my girls achieve is another celebration in my home. Big or small, whether it was at age-appropriate developmental milestone or if it came 1.5 years later. Based on many accounts of parents with either neuro-typical or children on the Autism spectrum, their kids were toilet trained (fully or partially or only for daytime) around the age of 2.5 – 3 years old. This turned out to be a struggle for us.

Maya developed typically eversince she was born, hit every developmental milestone on time. She was crawling, walking, babbling and talking at the appropriate age. Apart from being cranky, fussy, poor feeder, poor sleeper and prone to epic tantrums, she developed age-appropriate skill sets up until the age of 1.5 years old. This was when she received her last and final vaccination – the Meningococcal C, a requirement of the New South Wales Australia Health authority. She had a combined vaccination schedule based on both Australia and Malaysia’s health requirement. This was also during the month that her younger sister Yasmin was born in March 2007. Very soon after that, we also got Maya started on drinking fresh cow’s milk.

For the next 6 months, the regression was not very apparent to us. Mostly due to the fact that we were preoccupied with our 2nd daughter. However, by early 2008 I started to notice that Maya did not learn any new skills, even though she had a large vocabulary of words, she is not progressing to actually communicating with us. She continued to communicate with us through pulling our hands or most commonly, by throwing tantrums. She did not label anymore words, she spoke less and less. Though she would talk and sing a lot when she woke up at 2am. Neither did she seek out our company. A friend actually admired me, saying that it’s so great that Maya is quite happy to play by herself, that she wasn’t clingy to me nor did she require me to entertain her all day long. For 1 second, I actually thought yes, I’m lucky. I have time to concentrate on my 2nd daughter without feeling guilty of neglecting Maya. However, deep down I yearned for her to call me Mummy. She was perfectly content to spend all day in her room, playing quietly by herself. I wasn’t quite sure what she did, but she seemed contented. There were many more signs of her regression, loss of previously acquired skills as well as the lack of new development.
After the official Autism diagnosis at age 2y8m and getting on with the work of therapy and biomedical intervention, we tried to introduce potty training when she was nearly 3 years old. No effect whatsoever. Not wanting to push it, we tried again when she was 3.5 years old. Again, no luck. We enlisted the help of our hardworking ABA team, taking her to the bathroom every hour. After 6 months of toilet training with ABA methods, when she was 4 years old in October 2009, Maya finally started peeing on the potty regularly. However, at home she would insist on using the small potty, rather than use the regular toilet. This coincided when we started her on TMG. Coincidentally, she was able to tolerate clothes better too and actually allowed us to put on nightgowns for bed. The fights we used to have trying to get her dressed was long gone.
She also insisted on wearing a nappy when doing a bowel movement. She would never poo poo on the potty or the toilet. We tried ABA techniques and used social stories. Usually, Maya responded very well with social stories and we managed to resolve quite a few issues using them. However, she was pretty verbal and had great cognitive function by then and always insisted that she can only poo poo in a nappy. She would crouch half-standing usually in a corner of the living room and strain.
By then, we had resolved a lot of her gut issues. She no longer had constipation or incontinence and we were able to keep her recurrent yeast overgrowth under control. However, 3 weeks ago she started having constipation again. She would have a bowel movement every 3 days and it was either very hard and pebbly or very soft and little. This affected her behavior and appetite to a small degree. Our usual methods of relieving it didn’t seem to work. Our DAN doctor surmised that it was another yeast infection, as yeast overgrowth can cause constipation. So we put her on a course of my favorite anti-fungal Diflucan. As most of you already know, yeast overgrowth tend to recur time and time again in our children. Historically, Maya has responded very well on Diflucan. She was calm, focused and ‘sparkling’. There’s no other word to describe it, Maya was like the real Maya that I knew existed underneath the weight of Autism.
We also did another urine Organic Acid Test by Metametrics Lab. The previous OATs was done 9 months ago, since then we have done much to address Maya’s biochemistry issues. We needed another look at her current position and see if there are other things we can fine-tune. The recent OATs confirmed high presence of yeast metabolites. Once we put Maya on Diflucan, her bowel movements became regular and the texture is normal. There was some slight die-off however it was a small price to pay for the improvements we saw later.
On the 3rd day she was on Diflucan, for the first time ever Maya allowed us to seat her on the normal toilet to do a poo poo. This was a huge achievement for Maya, we were so excited that my husband took a video of Maya sitting on the toilet doing her first poo. This continued consistently every day for the next few days.
Maya was on a 2 week course of Diflucan, however I discovered we did not have enough capsules to last us for 14 days. In the midst of communicating with our DAN doctor and trying to get more stock from Malaysian pharmacies, Maya missed 2 days of the anti-fungal. On the 1st day without Diflucan, Maya refused to poo on the toilet and demanded a nappy instead. After a consistent week of doing poos in the bathroom, I was disappointed. However we realized that by missing the anti-fungal, Maya had difficulty doing a bowel movement while sitting down. She needed to stand half-way crouched over, thus the need for nappies. On the 2nd day she missed the Diflucan, for the first time in 2 months Maya did not inform us that she needed to go to the bathroom. She had wet her pants.
Stopping an anti-fungal before the course is fully completed is akin to not completing an antibiotic course. It may cause another flare-up of yeast overgrowth. We managed to obtain more Diflucan, Maya has been back on it for 3 days now. Yesterday, she was back to pooing on the toilet again. We have been extremely lucky that when doing anti-fungal protocol or any other treatment, any regression or die-off reactions has been somewhat manageable compared to some other children. Even if there was major regression, it was always temporary and not permanent. She always got back to her previous level and managed to pick up any skills that she had lost. Her language and cognitive function is still amazing, her comprehension and compliance has consistently improved.
We are transitioning Maya to attend a mainstream kindergarten very soon. Recently I spoke to Maya and told her that very soon she will attend a new school. A big school called C******* School, with new teachers and new friends to play with. Also, that she needs to wear a uniform. Maya remembered all this and she told my mum all about it the next day when they came to visit. My parents had sent Maya off to her regular ABA school and Maya kept telling them that she needs to go to her new school C******* School and wear a uniform. I haven’t told anyone of our plans yet, so my mum was not aware of this. My mum came back to me and asked if everythi
ng that Maya said was correct. We were amazed at her memory and her comprehension, all this after only telling Maya about it once.
As you know, Maya has always had very strong preferences with clothing, preferring pretty pink dresses with spaghetti straps. So getting her used to the idea of a uniform was important to me. I told her “You must wear a uniform at C******* School. But when you go to Stepping Stones, you can wear whatever you want” Maya thought about it for a moment and declared “I wear a uniform to C******* School, but I can wear a dress to Stepping Stones”. My clever little girl worked it out all by herself! I wonder how she will do with the new uniform, it’s got short sleeves and has a blue checkered print…..

>Biomedical Treatments For Autism Spectrum Disorder

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KL Biomed Invites You To:

A PRESENTATION BY DR RINA ADELINE, MD

A DEFEAT AUTISM NOW! DOCTOR


Time: 7:30pm – 9:30pm

Date: Tuesday, 9 February 2010

Refreshments will be served

Venue: Level 5, Matahari 2, Cititel Hotel @MidValley, Lingkaran Syed Putra, 59200 Kuala Lumpur


Registration Fee: RM100.00 per person

Family & Friends Special Offer:

Register for 2 attendees for only RM180.00

Register for 3 attendees for only RM270.00


About Dr Rina Adeline, MD

Dr Rina Adeline, MD, Dr.MS, Sp.MK is a dedicated member of the Autism Research Institute (ARI) and is trained as a Defeat Autism Now! (DAN!) Doctor. She is a Medical Doctor with a background in Family Medicine. She lectures at the Dept. of Microbiology, Faculty of Medicine, University Padjadjaran, Indonesia. She is head of Klinik Intervensi Biologis Medik, the clinic specializes in treating children with Autism Spectrum Disorder (ASD) and other related disorders. Dr Rina has treated over 1000 children with ASD. She has completed the following training with Defeat Autism Now! Completed Level I Clinician Seminar 2007, Completed Level II Clinician Seminar 2008, 2009.

What Is Biomedical?

Biomedical Intervention is an alternative treatment for Autism Spectrum Disorder and other related disorders. It seeks to treat the root causes of the disorder with vitamin supplementation and dietary changes. Find out the causes of Autism and the Interventions that can help. For more information on biomedical treatments, please visit www.autism.com

If you are a parent or a professional involved in the care of a child diagnosed with Autism, ADHD, PDD-NOS, Aspergers, Aspraxia and other related disorders, this presentation is for you.

“I would like other families to know that Autism is treatable, reversible, and in some cases curable. There is hope for any child, no matter how severely afflicted. All children, with intensive biomedical protocols, can improve and enjoy a better quality of life.” – Claudia, USA

To Register

Please RSVP by 2 February 2010. Register early, limited seats available. This event is for adults only. To register, please email us your name(s) telephone number and email address to klbiomed@gmail.com Payment details wil be sent out to you when you register.

>Bargain Hunters

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A parent’s role in biomed requires us to move with caution, act with bravery and yet, race against time. Biomed, like everything else in Autism is a tough journey, full of dangers, pitfalls and requires deep pockets. It requires full family participation and you’re expected to hit the ground running. We need to be smart shoppers, compare prices and source alternative suppliers. In the end, we turn into procurement and sourcing experts.

In Malaysia, we have several options on where to source supplements. Mind you, it is a little bit harder to get, but the results are well worth it.

Option 1 – Purchase from your DAN practitioner. Depending on who your doctor is, he or she may be able to supply most of your supplements. Some doctors only supply Tier-3 supplements. Some doctors do not carry any supplements at all, some may depend on delivery and stock availability. Provided that you are able to travel regularly to where your doctor practice, this may be the most convenient option as it takes away the hassle of sourcing your own products. Some doctors are able to take credit card payment, otherwise cash flow may be an issue for some.

Option 2 – Purchase from a retailer. In Singapore, Back2Basics carries a good range of supplements from several trusted brands. They also sell food items and organic cleaning products. Visit them at www.b2bdiet.com.sg In Jakarta, Kedai Radita carries Kirkman’s and a few select brands. Please contact the owner Pak Agus for details at bagina@cbn.net.id . Both these 2 retailers are not able to deliver outside of their city/country. Cash terms only, no credit card facility with either shops. However, Back2Basics offers NETS payment facility for those who have a Singapore debit card. For those who are able to travel regularly to Hong Kong, please check out www.littlegianthk.com . Some countries may have higher taxes and duties, this will affect the cost of the product.

Option 3 – Purchase online. There are a few online stores especially in the United States that carries a huge range of supplements. This online store www.spectrumsupplements.com delivers directly to Malaysia. Their prices are competitive and they offer good rates for international deliveries. There may be other retailers, however you would need to do your own research and contact them directly regarding delivery. For certain specialist products from certain companies that are not able to deliver directly to Malaysia, you can overcome this by setting up a hub account. There are services that creates a USA mailing address for you; you then have the products delivered to the address provided by the Hub service. In turn, the service will then post it to you. This will incur additional delivery costs and may take a longer turnaround time. But it’s invaluable for certain niche products that you are not able to get elsewhere. Visit www.vshub.com for details. With any international deliveries, you are subject to Malaysian customs inspection.

I generally do not recommend purchasing online any supplements that require refrigeration. Even though the company may provide ice packs and insulated packaging, I worry that in case of undue delays especially at Malaysian customs, the ice may melt in the meantime and you end up with a product that has lost it’s efficacy and stability due to our hot tropical climate.

When shopping for refrigerated products, do bring your own insulated bags and ice packs to ensure you maintain the potency and freshness of your products. Some doctors and retailers may provide it, however they usually run out of stock.

When purchasing directly from the doctors or retailers in neighboring countries, it’s advisable to bring supporting documents eg. test results or doctors prescription when crossing the border or flying through the international airport. In the event where a customs official question you on the many many bottles of capsules and tablets, you’ll need to show proof that it is for personal use and not for resale. So far, I have traveled by plane as well as driven across the Malaysia/Singapore border with no issues at all. But, just in case…..

Depending on your budget, time and travel arrangements, there are many options to choose from to suit your requirements. There are pros and cons to every method. I urge you to compare prices and source your products wisely. Price is not the only factor, dependability and the quality of service provided bears heavily in my mind whenever I shop for supplements. Obviously, it is not as convenient as popping over to your local Giant hypermarket, however nothing in Autism is ever easy or cheap. However, do not let this be an excuse not to pursue biomedical treatment. There are far bigger hurdles to overcome. It’s just part of the daily struggle and challenges we face daily in trying to recover our children.

By sourcing your own products, you’ll also find different formulations eg. magnesium comes in capsules, liquid AND soluble powder, at different potency, taste and texture. This way, you have the freedom to choose which formulations suits your child’s taste and preference. Your doctor or preferred retailer may only carry one type, however you’ll soon find that there are many choices out there.

I know many enterprising parents who actively source out the cheapest discounts straight from the distributors. Some are kind enough to insist that the distributor extend the discounts to their friends. Some parents purchase huge 25 kg bags of Epsom Salts and distribute it to friends, just because it’s such a hassle to purchase little 300mg bags all the time and the stores are always running out of stock. Some parents are conscientious enough to purchase supplements on behalf of friends when they are in Singapore or Jakarta. This is a harder task than it looks, their minds are often racing thinking of their own purchases for their own children and need to focus on this task. Yet they still take the time to help other parents in need. Oftentimes they use their own money upfront and take great care in ensuring the orders are right. Other kind parents constantly purchase supplements for friends when doing their own online orders. Not only that, they use their own money upfront first and bear the risk associated whenever customs officials question them. They rely on the fact that these friends will pay them back. The trust and kindness extended by these parents are much appreciated. Some people call them Autism Mom Bargain Hunters, I call them my friends.


>Prioritizing Treatment

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Children with Autism Spectrum Disorder and other related disorders usually present a variety of underlying medical issues. Food intolerance, nutritional deficiencies, impaired detoxification, metabolic disorders, multiple infections, mitochondrial dysfunction, inflammation, oxidative stress, leaky gut, high toxic load, damage caused by heavy metals, immune dysregulation, multiple gut issues, blockages in neurological pathways and dysfunction in multiple biochemical pathways to name a few. Both my daughters have a combination of the issues I listed above in differing severity. And they each have a unique treatment plan and different sets of priorities. By addressing all these issues, we find that our children’s behavior, cognition and attention improve as well as a reduction in Autistic behaviors in Maya.

There is no 1-size-fits-all protocol in biomed, both my girls are unique and presents a different set of challenges. In view of the many issues to address, I prefer to work with a trusted DAN doctor who can provide an intensive and comprehensive treatment plan.

Due to the many issues that needs to be addressed, it makes sense that there is no 1 cure-all pill either. Commonly, we end up with 20-25 supplements a day! However, this list of supplements is ever revolving, the supplements and dosage may change according to which protocols are implemented and how we prioritize it. And we definitely do not start on all 20 supplements straight away. Each child has a different set of supplements and priorities, depending on clinical observations, historical findings, test results and parents’ feedback. Please consult with a trusted DAN practitioner as well as do your own research on this.

I usually introduce only 1 new supplement a week. In my personal experience, this seems to be the best method for my two girls. Some children are able to start and tolerate new supplements quickly, however going slow and steady has been most effective for us. Whenever we introduce too many new supplements at a faster pace, we usually experience intolerable side-effects and sometimes regression. This would eventually slow down the progress because we would then need more time to adjust the protocol and wait for the side-effects to subside. I would start with a lower dosage, perhaps 1/2 or even 1/4 depending on which supplement. And every 3 days I will increase the dosage slightly. Our child needs to get used to the taste and texture of the supplements. Some of them tastes horrible, also most children with ASD have very sensitive taste buds due to their sensory issues. Their body also needs time to build up tolerance to the full dosage. Most importantly, we need to observe for any improvements, side-effects and regression. Please remember that when taking any supplements, it causes changes in their body. Preferably good changes. However, we are not able to accurately predict how a child will react to a supplement or treatment until we try it.

I prefer to only purchase 3-4 new supplements per month. Because this is the maximum number of new things that I can try on my girls safely. Her reaction, whether good or bad, will determine the next course of action. Her reaction will give you a clue as to what the next step or protocol you should start. All of Maya’s positive reaction to a treatment gave me and my doctor further clues as to what works best for Maya. All of the negative reaction such as intolerable side-effects or regression gave us clues for other underlying issues she may have that we were not able to detect earlier.

Most children undergoing intensive biomedical intervention may end up taking 25 supplement eventually, however I would not buy all 25 at a time. This is counter-productive, because the list of supplements may vary. The next batch of supplements you add on will depend on your child’s reaction to certain supplements. You will need to work closely with your DAN doctor and provide him with regular updates. However, if you have already purchased all 25 supplements, and you are not sure what to start with, please consult your doctor. Please discuss with other parents and learn from their experience. Sign up to the KL Biomed forum, there you can post queries as well as learn from previous posts by other members.

When we first realized the extent of the damage and underlying medical conditions that we needed to address with Maya, our first questions was where do we start? How do we start? How do we prioritize which supplements or protocols to start with? We have several DAN doctors who provide crucial guidance and sets down the protocols, however it is still my responsibility to ensure that we execute it well.

With both my girls, I started by putting them on the GFCF diet. Then I introduced the basic supplements one by one. For the first 2-3 months of biomed, I started my girls on basic gut and nutritional supplements. Such as Vitamin C, B6 & B Vitamins formulations, calcium, magnesium, zinc, probiotics, 2 types of digestive enzymes, cod liver oil, epsom salt baths and L-Glutathione lotion. The sequence and order would differ according to each girl’s unique issues. After we have safely implemented those basic 12 supplements, only then were we ready to start other protocols. In my personal opinion, anti-fungals and anti-virals should not be implemented until you are in Month 3. I needed to have the basic s
upplements in place first, as this prepares the body for future treatments. If you don’t have a solid foundation, you may find that you are not fully optimizing the supplements and may not achieve the desired results. If you do not lay down a proper foundation, you may find that certain Tier 2 or Tier 3 treatments may have either no effect or worse, present an adverse effect instead. The first 2-3 months is crucial, the GFCF diet and 1st Tier supplements lays the ground-work for future more intensive protocols. Future protocols that use Tier 2 and 3 supplements includes anti-fungal, anti-bacterial, anti-viral, methylation products, amino acid supplementation, mitochondrial products, leaky gut protocol, detoxification, chelation and others.

I research each and every single supplement before I give it to my girls. I double check that the ingredients are safe and the dosage is correct. I also make sure that it is appropriate for this stage of my child’s treatment. We want to make sure that we maximize the benefits of these costly supplements, making sure which supplement can be safely taken with which. And which ones should be taken far apart from the other. Some supplements should be taken together as it provides a synergistic reaction. Some supplements should be taken separately, as one may cancel out the other. Or worse, react badly with each other.

Today, Maya takes 23 supplements, 1 injection, 1 bath and 2 lotions every day. This comes up to 30 capsules, 1 and 1/2 teaspoon of powdered formulation, 10ml of liquid, 2 grams of cream and 1 cup of Epsom Salts daily. If you lined up every capsule, it would be a very long line indeed. And Yasmin has 20 supplements, 1 injection, 2 creams and 1 bath a day. This comes up to 26 capsules & tablets, 10ml of oral liquid supplements, 1 teaspoon of various powdered formulations, 2 grams of transdermal cream and 1 cup of Epsom Salts. That’s a lot of supplements to take. And it requires constant effort to ensure that both girls take them all. Because a majority of the supplements are included in their milk bottles, we sometimes feel like we’re a bartender, always mixing different cocktails every day. My husband pretends that he’s Tom Cruise in the movie Cocktail. He sure knows how to shake a milk bottle…..




>ATEC Score

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The Autism Treatment Evaluation Checklist (ATEC) was designed for parents, therapists and doctors to evaluate a child’s response to a treatment. It is also commonly used by parents as a tool to track the progress of their child.
I have done this several times for Maya. This was a good way to track Maya’s progress, it gave me actual scores of where Maya was at that moment. The tests scores can range from 0 to 180. The higher the score, the more impaired the subject. A score of 0 indicates a child who is indistinguishable from other neuro-typical children. If you are concerned about the accuracy of the scoring, you may choose to have others such as therapists, spouse or someone close to the child do the ATEC. You can then compare the scores.
The ATEC is not meant as a diagnostic tool. In order to do a comprehensive assessment and obtain a diagnosis for your child, please contact a healthcare professional. You may do the ATEC evaluation online at http://www.autism.com/ari/atec/atec-online.htm
Maya’s ATEC scores was 100 in February 09, 35 in July 09 and 25 in December 09. Both Paul and I did this separately and we both came up to pretty much the same score. Please see below for Maya’s ATEC scores;

ATEC

Feb 09

Jul 09

Dec 09

Speech / Language / Communication

15

n/a

 0

Sociability

22

n/a

3

Sensory /

Cognitive Awareness

22

n/a

 2

Health / Physical /

Behavior

41

n/a

20

Total

100

35

25

I am overjoyed at the scores. We will continue with biomedical treatments and ABA. However, early next year we will place Maya in a typical kindergarden with a shadow. She will gradually increase her attendance from part-time to full-time. We hope that Maya will integrate well and will no longer need a shadow. How long we will need to continue with ABA remains to be seen.
From 100 down to 25 within 10 months is amazing indeed. Today, Maya is a much happier and joyful girl compared to last year. Who knows what next year will bring, but I’m sure Maya will continue and progress. We’re on the road to Recovery. She is my Warrior Princess.

>The Year That Was…..

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Coming up to the new year, I get very introspective of the past events in this last 12 months. Instead of coming up with new year’s resolutions, I choose to remember the highlights and achievements of 2009.


1 week ago, we went to a little girl’s birthday party. Previously, Maya had the most intense fear of birthday candles. Birthday parties were always a nightmare, she would cry and scream at the crowds. Whether it’s her own birthday or going to other children’s birthday parties. Previously, Maya had never blown out the candles on her own birthday cake, ever. Last week, for the very first time in her life, she blew out the candles on the cake on behalf of the birthday girl.

Last year, Maya couldn’t even make a simple 1 word request. She would instead cry or tantrum and we would have to figure out what it was she wanted. The progress in 2008 was very slow. She eventually managed to make 2 word requests. “More milk”, “Chocolate cookies” and “Daddy fix” by the end of last year. However, this year, her language and communication skills have made a huge leap. She can now talk in 9 word sentences. She can talk in 3 back to back sentences. And she has proper chats with us with back and forth conversation. Her pronounciation and articulation is at the level of a 7 year old. She can articulate her needs and feelings at age appropriate level. She made 1 1/2 years progress in speech within 7 months, her therapists, doctors and us are all amazed.

She has lost many of the stims and behaviors typically seen when she was initially diagnosed with Autism. She no longer walks on tip toes, the echolalia has stopped and she has very few tantrums. She is now able to tolerate loud noises and strange places. There is less fear of strangers and she is able to play with other children. We can take her to other people’s houses or to social events without her having a complete meltdown. She is able to concentrate and finish a task. She is no longer hyperactive. When going out, she doesn’t run away but stays close to me. Some of the behaviors relating to sensory processing issues have reduced, she no longer mouths and lick objects. She can also tolerate loud noises such as a busy airport or the sound of construction work.

Maya’s sweet nature is now showing through. She is very polite and has beautiful manners. She says please and thank you and is very affectionate. Maya is gentle and caring. She can now have short conversations on the telephone. She can grip a pencil properly now and able to make age appropriate drawings. She is currently learning how to write the alphabet and learning to read. She can spell and write her name. She can count to 100. She learnt how to drink from a straw 4 months ago and is now able to feed herself with a spoon. She can now hold a cup and drink by herself without spilling it. We finally managed to toilet train her when she turned 4 years old. And she requests nicely to go to the bathroom and so far has only had 2 accidents. After a life-long phobia, she can now tolerate taking medicine from a syringe.

She has learnt how to play simple games on the computer and able to use the keyboard and mouse properly. She has learnt many card games such as Uno, Snap and Happy Families. Uno is her favourite game and she’s pretty good at it too. She can play simple board games too. Maya now enjoys playing with her sister Yasmin. These days, the 2 girls are happy to play together and make up little games to play. She has learnt to appreciate and understand so much more now; previously when we went to the zoo, she would be concentrating hard on the toy she’s holding and not aware of the animals in front of her. Now, she loves going to the zoo, night safari, butterfly park and bird parks. Her eye contact previously was fleeting, it was very hard to get her attention. She had a very short attention span and seemed to be lost in her own world. Her awareness and cognition has improved immensely. Previously we’d be calling her name and she would not respond. Now, whenever we call her, she says “Yes, Mummy” and looks us in the eye.

She has some very girly interests now; princesses, ponies, fairies, mermaids, ice skating, baking cookies, castles, flower gardens, tea parties, wedding gowns and other pink sparkly things are her absolute favorites.

We struggled with daily chores like getting her dressed, wearing shoes, going to school and learning to toilet-train. It was a struggle every day getting her dressed. She would tantrum whenever she had to wear clothes. She also had an obsession with ballet tutus and would insist wearing it every day. She then developed a fancy to wearing princessy dresses and would wear it even to bed. She preferred wearing sleeveless string tops and skirts. She hated wearing pyjamas. Now she wears only the softest prettiest nightgowns I can buy.

Certain key supplements and biomedical treatment made a big impact in certain behaviors and skills. Once we started her on TMG in October, she started tolerating wearing tshirts and pants without any fuss at all. TMG also helped her with toilet training. Her language and cognition made the biggest progress the moment we started her on MB12 shots in July 2009. She started making 1 word requests the first week of starting the GFCF diet. Her hyperactivity and constant climbing and jumping stopped once we started her on anti-fungal treatment. She used to scratch her bottom and bite her toenails, that stopped once we addressed the skin and toe fungal infections.

She used to cry every time we dropped her off at school for the first 3 months. Now, she absolutely loves school. Music class is her favourite subject and she loves doing Arts and Crafts. Previously, going out with her was an ordeal. Now, she is a joy to be with and behaves well. We can now take her shopping, to friends house and to many other places with very little stress.

Recently I asked her what she did in school. She replied “I played Uno!” What else did you do I asked. “I did Arts and Crafts. And music class with Ms Phoebe!” What did you sing in music class? “Hannah Montana! Hannah Montana has an acoustic guitar! Miley Cyrus is a girl. ” Then I asked what she had for lunch. “I eat chicken…… not sausages.” When I checked with her teacher the next day, the teacher confirmed that all of the above were correct. The teacher also said that Maya had chicken f
or lunch yesterday, but she had sausages the previous day.

We baked christmas cookies and cakes recently. Maya said “Mummy, what are you cooking? You’re a good chef Mummy. I am a waiter!” She loves helping me in the kitchen. She helps to stir the batter, brush margerine on the cake tins, places the muffin paper cups into the tin, spoons the batter into the cups. Then she gets to decorate them anyway she likes. There’s lots of rainbow sprinkles, silver balls, sugar flowers and chocolate buttons.

A couple of weeks ago, Paul and I were in our room. Maya came in dressed in her current favorite white dress and wearing a little wedding veil on her head. She said “Look mummy, I’m a wedding girl!” I asked her who she wanted to marry, is it Prince Charming? And Maya said “No, I’m going to marry Daddy!”. I had a sudden flash forward then; I could picture in my mind Maya walking down the aisle and getting married. Someday, my little girl will grow up and fall in love, get married, have children of her own and lead a happy life. We are very proud of her indeed.

When we first received Maya’s diagnosis, we despaired that we may not be able to help our child. Our main concern was the mistaken belief that Malaysia may not have the resources and services compared to other developed countries. We felt pressured to move to Australia, the UK or USA. It took a little bit more effort, but we managed to overcome any challenges that came our way. Being a Malaysian and living in Malaysia did not stop me from helping my child. It wasn’t easy, but nothing in Autism is easy. Malaysia Boleh!

A combination of intensive biomedical as well as intensive ABA has shown us tremendous results. When we first started ABA, we were warned that ABA will turn our child into a robot. That her speech and behavior modification will be stilted and robotic. We were told that ABA methods were unnatural, that it was like training a dog. When we first started biomedical interventions, mainstream medical doctors would try to discourage us from it. Claiming that it’s unproven, it’s nonsense, that we’re wasting our money, that it will not help at all. How wrong they are…… We experienced utmost kindness, patience and dedication with our ABA team. ABA has shaped her skills and abilities. Maya’s speech is very natural, she is full of joy and life. She is certainly not a robot. Biomedical treatment has made amazing improvements in Maya’s health and behavior. We would not have achieved such rapid progress with ABA without the help of biomedical treatments. These two interventions complimented each other.

We couldn’t have done this without the help of our hardworking ABA therapists, our DAN doctors and the support of family and friends. Although 2009 has been an incredibly challenging and stressful year, it has also brought us much satisfaction and happiness. We feel that we have our daughter back, that she is no longer lost in Autism. Maya is not yet Recovered from Autism, however we truly believe that soon she will lose the ASD diagnosis. It’s so close I can smell it. We are on the way to Recovery and we hope that next year be filled with more love and joy. Happy New Year!




>Relaxing the Diet

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We had an amazing holiday in Sabah recently. Yasmin loved the water slides, Maya really loves the flowers in the garden and both girls climbed trees. We went on a boat ride and visited the sea gypsy villages on the river. Maya loved fishing for crabs, she caught one and named it Pinchy the Crab. And the highlight of our trip was watching the orang utans in their natural habitat.

It was the first time that the girls did not fall sick whilst on holiday, neither did they fall sick after coming back. Most importantly, we took a bold step by relaxing the girls’ strict gluten-free and casein-free and low sugar diet.

Maya has been on the GFCF diet for 1 1/2 years and Yasmin has been on it for 1 year. Also, we have made tremendous progress in Maya and seen some improvements in Yasmin. Thus, we conclude that their gut and bodies have healed to a certain extent. My strategy was to allow the girls to eat gluten and casein and sugar, while making sure they have digestive enzymes too. And to observe for any changes or regression.
Maya was in absolute heaven, she had coco pops for breakfast, she had a choice of fresh breads and buns from the breakfast buffet. She chose a different flavor of yoghurt every morning and we would buy an ice cream or a lollipop from the shop at teatime everyday. She was loading up on wheat based carbs, dairy and sugar – all the things she has missed for so long. Yasmin just loves her coco pops and gluten toast for breakfast, but otherwise was happy to stick to her usual diet. We make sure that they have a relatively healthy lunch and dinner with lots of protein and vegetables, it’s not all junk food:-)
We would pre-mix a container with Kirkman’s Enzym DPP-IV and Kirkman’s Phenol Assist with juice. Every-time the girls ate, we would have a syringe handy and just squirt it in. We did this for the entire 5 days holiday. The other resort guests would stare at us when we brought out the giant 20cc syringe and feed the girls that way. They must think we’re nuts. We also made sure they had all the other supplements as well.
They both slept well, had daily bowel movements and there was no meltdowns or behavior changes. Previously, any infractions to the diet would result in sleep issues, constipation, increased yeast behaviors and tantrums. I assume this means the girls’ gastrointestinal health has improved especially their leaky gut. All the supplements that we have been giving religiously for the past 1 year has made a huge impact. However, now that we’re back at home, we will still continue with the GFCF diet. The diet is the cornerstone of biomedical intervention; in order for the other supplements to work optimally, we need to have the diet in place.
We have fond memories of Sabah and Maya keeps saying she wants to go back there. It’s a magical place full of yummy bread, multi-flavored lollipops and endless ice-cream.

>Sleep Issues

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Sleep issues are a common problem in children with ASD. Lack of sleep, late bedtimes, difficulty falling asleep, night terrors, recurrent night awakenings, laughing or talking when waking up at night, light sleeper, broken sleep, insufficient sleep hours according to age-appropriate levels, prolonged daytime napping especially for children older than 4 years old perhaps and other common sleep issues. This affects the child’s development and behavior. Sleep issues also affect siblings who share a room. Subsequently, parents are also affected by the continuous nights of broken sleep. Broken or lack of sleep in adults can lead to depression, irritability, stress, affects our ability to cope and think, it affects our work, home and life in general.

Maya had sleep issues from the day she was born. A newborn usually sleeps 20 to 22 hours a day, Maya was awake for 12 hours a day for the first 3 weeks of her life. During the day she would fall asleep for 20 minutes than wake up howling and screaming. An hour later she would sleep for another 15 mintues and so on all day long. She would wake up every hour at night to be fed until she was 2 months old, it improved slightly as she grew older. We would take 1 hour just to get her to sleep, by rocking and cradling non-stop. She managed to go to sleep by herself and sleep through the night when she was 1 years old, this lasted for 12 months. A whole year of uninterrupted sleep for Paul and I, however during the day we still had to deal with her increasingly difficult behavior.
However, the night terrors and broken sleep started when she was 2 years old. She would alternate between inconsolable crying and screaming one night, and the next night she would wake up at 2am talking and singing to herself in the dark till 5am. We tried many techniques to get her back to sleep such as giving her more milk, changing nappy, rocking and cuddling, then not giving her milk in case it reinforced her sleep awakenings etc but nothing worked. This pattern continued pretty much every night for the next 8 months. At this time, Maya was 2y8m – she was diagnosed with mild to moderate Autism Spectrum Disorder.
We immediately put her on the gluten-free and casein-free diet. Incidentally her sleep improved, she would sleep 12 hours straight. Though the night time talking and singing would recur at times. Only when we started treating her gut issues especially yeast treatments that she now sleeps well through the night. We also found out that the girls would wake up if the room was too hot or too cold. We also refined her diet further by eliminating IgG reactive foods including soy and eggs, reducing sugar, artificial flavorings including MSG and colorings. We reduced allergens and dust accumulating things in their bedroom, ripped up the filthy wall to wall carpeting, boarded up the old centralized air conditioning duct which was moldy and the thermostat control was broken, installed an air purifier and a new air conditioner. We used melatonin especially in the first few months of early biomed, it helped but only to a certain extent.
In biomedical circles, sleep issues in Autism are commonly related to diet and gut disorders. Treating sleep issues include the GFCF diet, reducing food sensitivities, probiotics, anti-fungal, magnesium, digestive enzymes, melatonin, treating any gut issues including inflammation, constipation and reflux. Constipation, allergens, yeast overgrowth, food intolerance and illness are common culprits. It would help to reduce stimulating activities such as boisterous play and watching tv just before bedtimes. Not eating too close to bedtimes may also help as well as more physical exercise during the day.
Melatonin will help regulate our sleep cycle, however this is only a temporary solution. It will only help to a certain extent, it is not a substitute for healing the underlying medical reasons for sleep issues such as GI disorders. All the melatonin in the world will not help a child to sleep if the child is experiencing stomach discomfort, tummy pains, yeast overgrowth or allergic reactions.
Yasmin slept well throughout until her bout with Rotavirus. Since then, her night awakenings have been constant. Since the girls now share a bedroom, this is affecting her sister’s sleep too. Her sleep has improved considerably since refining her diet together with gut treatments. Most importantly, we dealt with her recurrent bacterial infections as this affected her sleep and other aspects of her behavior. She has slept well for the past couple of weeks uninterrupted, but last night she was up from 2am-5am talking and singing. Looking back, we realized that yesterday we took her out for lunch but not Maya and perhaps the food was prepared with MSG or something that affected her. Usually the girls only eat home-cooked food. Hopefully she will be ok tonight.
In the past 1 year, both our girls have had several night awakenings, but we could always trace it back to either eating too much sugar, yeast overgrowth, constipation, bacterial infections, infractions in her diet or due to illness such as cold, flu and fever.

>KL Biomed Support Group 6/12/09

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Dear Parents,

I would like to invite you to the upcoming KL Biomed Support Group. Rafidah has kindly volunteered to host the event again, the address and location map will be sent to you once you have confirmed your attendance.

Time: 10.00am – 12.00pm
Date: Sunday, 6th December 2009
Venue: Ara Damansara

The primary focus of this group is to share knowledge and provide support for parents who are already doing biomedical treatments or about to start biomedical intervention for Autism Spectrum Disorders and other related disorders. For the upcoming support group, we welcome feedback on suggested topics of discussion that you wish to discuss or share with the group. Please contact me directly on this. This support group is for adults only, all opinions and advice given from this group is based on our collective personal experience and should not be construed as medical advice.

Please rsvp to me latest by Friday 4th December 2009 by email at vmarisd@gmail.com. Kindly provide your name, name of partner if attending, phone number and email. I hope to see you there!