Author Archives: Admin

>Hospitalised Again

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>Both girls were hospitalized early this month for vomiting, fever and diarrhea. Yasmin had just started Kindergarden on Monday and fell sick on Wednesday. She was then admitted into hospital on Friday. She was so ill that when the doctor inserted the IV needle into her little hand, she didn’t even cry. Maya was admitted the following day. Both girls were discharged on Monday.

When we rang up Yasmin’s school to notify them of Yasmin’s illness, they confirmed that several children had previously been sick with the same symptoms for the past 2 months. Because of Yasmin’s compromised immune system and her sensitivity to tummy bugs, she caught the virus very quickly and severely.

Living in the same house and sharing a room with her sister, Maya of course caught the contagious virus. However, she recovered much quicker and bounced back to normal health pretty fast. Maya was back in school the day after she was discharged from hospital. However, it took Yasmin longer to regain her strength and appetite. Rotavirus was ruled out, however the labs could not identify the virus.
It was a surreal experience for Paul and I. We had both girls in the same room at the hospital, both with matching hospital tags and IV drips. We made the room as comfortable as possible for the girls, with favorite pillows, blankets and toys all over the place. Our little portable DVD player came very handy, keeping the girls calm and occupied especially when nurses and doctors came to poke and prod them. At times, it felt like we were on a bizarre holiday where the hotel room came with IV drips and the girls got matching wrist tags from the `Kids Club’ and we were all squashed into one room. Both Paul and I caught the virus too, I remember throwing up in the hospital bathroom while Maya asked me if I was ok and getting very upset over the retching sounds in the bathroom. And me trying to reassure her that Mummy was ok in between vomiting. However, as parents we soldier on and take care of our children regardless of our own health. This was the 2nd hospitalization for the girls in 1 year, we hope not to repeat the experience anytime soon.
With the growing realization that Yasmin’s gut issues and other possible underlying medical conditions are more serious than we original thought, we are now concentrating more effort in her biomedical treatment. After the hospitalization, we decided to do the OATs test and the Urinary Prophyrin test in Singapore. In the hopes that it will shed more light on to her underlying medical problems. She has been suffering from recurrent bacterial infections and numerous tummy bugs for the past 1 year. Her previous bout with Rotavirus in January 09 has impacted her in more ways than we could ever imagine. All her sensory disorders and stims have emerged after the Rotavirus. We pray that with more effort, Yasmin will not deteriorate further. I hope to stop this landslide she has been on before she is fully within the Autism spectrum.

>16 Month Journey

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This is our biomedical journey in the past 16 months – please see below for list of supplements that were added on as the months went by and the steps we took with our little girl.


June 2008 – Maya was diagnosed with mild to moderate Autism at 2 years 8 months. Implemented GFCF diet. Able to make occassional 1 word request within 1 week.

July – December 2008 – started home based ABA at 6 hours a week. Eventually this grew into 18 hours a week maximum by December. GFCF diet was refined over the next 6 months, but still included soy. Maya was able to make occassional 2 word request, less hyper and better mood. No other biomed intervention except GFCF diet.

January 2009 – Hospitalised with Rotavirus. Started center-based ABA for 30 hours per week. Change to rice milk, started Super Nu Thera, probiotics and Cod Liver Oil.

February – March 2009 – consulted with Dr Sundardas, he only required us to do hair analysis. Started calcium, zinc, 3 Billion CFU non-refrigerated probiotic, Nordic Naturals cod liver oil, Efalex, Intestamine, NTC Detox, Zeolite, digestive enzymes, ASD Plex, Super Nu Thera. Implemented the Blood Type Diet as per recommendation. After 2 1/2 months on his protocol and despite my insistence that we do more to address Maya’s unresolved gut issues, Dr S recommended we start on B12 shots instead. So we decided to change to another doctor as I feel that there were gaps in treatment for gut issues. Atec score of 78

April 2009 – consulted with Dr Erwin Kay. Asked us to do OATs, IgG and Comprehensive Stool Test. Dr Erwin accepted the previous hair test result. Revert back to basic GFCF diet, started supplements based on basic gut treatment with prebiotic, multi-species probiotic, lactobaccilus probiotic, melatonin, l-glutamine (for leaky gut, but later had to stop because of bad regression), super nu thera, cod liver oil.


May 09 – added on taurine, digestive enzyme, phenol assist, glutathione lotion, 1 month course of anti-fungal Diflucan, epsom salt bath, n-acetyl cysteine, zinc. Changed to organic food.


June 09 – started 2 week course of Cedax antibiotic, rotate probiotics to Kirkman’s Probio Gold, 2nd course of Fluconazole antifungal, added calcium/magnesium combo, vitamin C, vitamin E, Methyl B12 (every 2 days, adjusted dosage for next 1 month) and Ketaconazole cream for her itchy and flaky feet (2-3 weeks only). Replaced old carpeting and air conditioning in the girls’ bedroom. Removed all dust-collecting and mold-producing items and installed an air purifier.


July 09 – added on Interfase, sodium butyrate, MSM glucosamin cream, AminoPlex (all these 4 based on Dr Westaway’s consult and monitored by Dr Erwin. Eventually had to stop AminoPlex due to regression) more readjustment of dosage for existing supplements. Added Dual Detox and Valtrex anti-viral (eventually we had to give up on Valtrex because we couldn’t get Maya to take it), 2 month course of Nystatin, Candex, increase magnesium, s.boulardii, OSR (upon Dr Westaway’s consult, but product ordered and approved by Dr Erwin). Replaced all non-stick cookware, reduce microwave use and plastics.


August 09- We did additional tests for Essential Fatty Acids, Plasma Amino Acid and kidney and liver function. Changed to Zinc picolinate and Ester C (based on Dr Rina’s consult), change to separate Calcium and magnesium (not combined), magnesium sulfate cream, 2nd course of Cedax antibiotic, another course of Fluconazole (both girls at this time had recurring gastro issues with bacterial infections and colds & flu), change MB12 to daily shots, rotate probiotics to Klaire Labs Therbiotic complete. Only use organic and chemical free cleaning products for household cleaning as well as body care including shampoo and soaps.


September 09 – Added Culturelle and increased probiotics due to last month’s infections, gut issues and antibiotic use. Increase MB12 to 0.05, change from SNT to B6 P-5-P, change to Magnesium glycinate powder, rotate digestive enzyme with Trienza, added ViraStop, SAMe200, Folate Acid, and adjustment of supplements based on new test results. Psychological assesment shows great improvement across the board, Atec scores down to 30 from previous 78 in April 2009.


October 09 – Maya turns 4 years old. Added TMG (upon Dr Anthony Underwood’s consult), readjust MB12 to alternate days, change from Candex to Candidase, increase ViraStop dosage (very little change due to Dr Erwin being away) Replaced all milk bottles to BPA free.


Who knows what next month will bring. It is undeniable that Maya’s progress has been on fast track ever since we had Dr Erwin to guide us, we couldn’t have gotten this far without him.

>Natural Yeast Treatments

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Yeast overgrowth leads to a host of behavioral problems common in children with Autism Spectrum Disorder. Nystatin and Diflucan are pharmaceutical anti-fungal treatments, they are effective in most children. However many parents are concerned about the long-term effects of these medication. Some children may not tolerate them well long-term due to kidney and liver function.
Not all children will have the same response to each anti-fungal. You may need to collaborate with a trusted doctor to provide an effective yeast protocol for your child. Some children may require several different anti-fungals taken one at a time or concurrently.
Natural Anti Fungals
There are many natural anti-fungal remedies, however the effectiveness may be child specific. See below where you can purchase them;

1. Candidase – these are enzymes that digest the cell walls of fungals. Buy from Back to Basics
2. Candex – same as above, just different brand. You can buy from Dr Erwin
3. Saccharomyces Boulardii – these are good yeast that attacks bad yeast. From Dr Erwin
4. Olive Leaf Extract – Vitakids Singapore
5. Oil of Oregano – very powerful anti-fungal and anti-viral properties. But very strong taste. Vitakids Singapore
6. Garlic extract – Vitakids Singapore

There are many others such as caprylic acid and grape seed extract (GSE) but I’m not sure where to get them.

Apart from choosing the appropriate anti-fungals, there are also other aspects of the treatment to be addressed. When implementing an effective anti-fungal treatment for your child, you should look at it as a whole. Killing the yeast is only one aspect of the yeast protocol. The anti-fungals are only as effective as the other aspects of your child’s treatment as a whole. Even the strongest anti-fungals will only work to a certain point if you don’t stop feeding the yeast. And yeast colonies will continue to thrive and return in certain favourable conditions. And if your body is not flushing out all the toxins released by killing the yeast and dead yeast cells effectively, it will remain in the body causing other behavioral issues. For my daughters, I try to address each aspect of yeast treatment;
1. Kill the yeast
2. Stop feeding the yeast
3. Discourage the yeast from returning
4. Detox
1. Killing The Yeast
This is where anti-fungals come in play, either pharmaceutical such as Nystatin or Diflucan, or natural remedies. Choosing which is best for your child requires some experimentation as well as the help of a trusted doctor. You may need to try several anti-fungals to find which works best for your child. Also, you may need more than just 1 anti-fungal. For some children, a combination works best for them. Again, you will need to experiment which combination works best.
2. Stop Feeding the Yeast
You need to reduce yeast-feeding foods especially sugar. All forms of sugar feeds yeast from honey, organic maple syrup to carbohydrates. It is up to you to decide on managing your child’s diet and which sugars you are willing to allow or reduce. Some children react favorably just by reducing sugary snacks, but some children may have to go so far as reducing fruits or most carbohydrates. Also, a good digestive enzyme to digest carbohydrate helps such as Kirkman’s Enzyme Complete with DPP-IV or TriEnza, you may want to add No Fenol or Phenol Assist as well.
3. Discourage the Yeast from Returning

Yeast colonies thrive in certain conditions, you will need to make your child’s body inhospitable and discourage yeast from growing. An altered PH balance such as an acidic gut environment is ideal for yeast-growth. Replenishing with lots of probiotics also leaves less room for the yeast to grow. A dysfunctional immune system will also contribute to yeast overgrowth. Regulating the immune system acts as a defense mechanism against various pathogens including bacterial, fungal and viral. Zinc and Vitamin C are important supplementation for the immune system.
4. Detox
When killing yeast it releases toxins, you need to ensure that the dead fungal cells and toxins are flushed out of the systtem. Address any constipation issues, daily bowel movement is important to ensure all toxins are removed from the body. Adequate magnesium helps with bowel movement. Epsom Salt baths or magnesium sulfate cream assists in the sulfation pathway, which is an important detoxification pathway in the body.

Die-Off Reaction
During die-off periods, our kids may experience headaches or bowel cramps. Which explains the behavioral problems such as hyperness, waking up at night talking and laughing, hyperness, cravings for sugar and carbs, irritability, crankiness and other reactions. For die-off reactions, Epsom Salt baths and activated charcoal will help. Also, reduce the anti-fungal dosage and increase it very slowly.

As some of you may know, we worked very closely with Dr Erwin to address Maya’s recurring yeast infections. We did 1 month course of Diflucan, followed by 3 months on Nystatin, followed by 1 month on Ketaconazole together with Candex 1 capsule in the morning and 2 capsules in the evening. We then added on S.Boulardii 1 capsule 3 times a day. Now, we are doing 1 capsule Candex morning and evening together with S.Boulardii 1 capsule 3 times daily. I am currently reducing the anti-fungals whilst observing for any more recurrent yeast flare ups.
Diet wise, I was not willing to forgo rice or gfcf bread so the Specific Carbohydrate Diet was not practical for us. A GFCF diet without sweet snacks, cakes, biscuits, sugary cereal, no fruit but still drinking very diluted juice was convenient and effective for us. We were on a strict `no cookies, sweets or cakes diet’ for 4 months, then we allowed it to once a month, and we saw yeast-like behavior flaring up again. Eventually the flare-ups has reduced and the girls are now able to tolerate sweet snacks 3 times a week with no problems.
Maya had a highly acidic gut, we were not able to address this because the supplement tasted horrible. But for both girls we give 50 Billion CFUs probiotics daily together with a pre-biotic. And supplement with Vitamin C and zinc for their immune system. We give Epsom Salt baths daily and apply Magnesium Sulfate cream for the sulfation pathway. Apply L-Glutathione lotion to replenish her glutathione levels which are essential for the detoxification pathway, magnesium for better bowel movement and chlorella for detox. It took us 6 months to finally address Maya’s recurrent yeast overgrowth. For now, I would consider Maya to be yeast-free. However for Yasmin, her recent course of antibiotics and recurring gastro issues requires a lot more time and effort to address her yeast overgrowth.

>How To Give Supplements

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When doing biomedical intervention, it consists of multiple tablets, capsules and liquid supplements. The child has to take up to 20 different supplements a day, for some many more. And getting your young child to take it all is a herculean task, even more difficult when dealing with a child with Autism Spectrum Disorder. No amount of rationalizing, bribing, encouragement and begging would force our kids to open their mouths, and if they do, they end up spitting it in your face. Some children including Maya are so resistant to taking anything remotely suspicious, their long-term feeding issue makes taking supplements even harder. And I don’t blame her, those supplements tastes horrible!

When first starting biomedical, we had a really tough time with Maya. We found out very quickly that ‘tough love’ did not work with her whenever we forcefully fed her with the supplements. Apart from spitting, she would usually end up vomiting everything in her tummy, she would cry and rage for a long time.Because our girls are physiologically too young to be able to swallow capsules and tablets, we end up opening a capsule and dissolving it into milk or juice. Previously I would grind up tablets in my lesung tumbuk, however I have since found pill crushers which grinds it up into a very fine powder. We tried feeding the liquid supplements with a spoon, but that turned out to be a disaster too. She would knock the spoon out of our hand, precious supplements flying everywhere.
We experimented by mixing and hiding it in milk or juice. Tried different coloured sippy cups, drinking from a straw, only putting in 1 capsule into a big bottle of milk, hiding it in rice, mixing into peanut butter, mashed bananas, we tried everything. It took us a long time to find a groove; we now know which supplements are better tolerated taste wise in milk, which ones are better in juice. Maya is very sensitive to taste, she would refuse to drink the milk constantly when we added in supplements. We wasted so much money, milk and supplements down the drain. We would start very slowly, adding just 1 supplement to the milk, and at only a quarter of the dosage. We would then slowly build up the amount till she can tolerate the whole dosage. Then we would add on a 2nd supplement and start at 1/4 dosage. This worked very effectively for us, we can now add 3 to 4 supplements into 1 bottle of milk.
There are supplements that turns the milk pink or green, we would give these supplements in milk in the middle of the night while they are asleep. We also find that the girls are more tolerant of stronger tasting supplements when drinking it in milk when they are deeply asleep. We take turns to feed the girls their milk at midnight, for now this is what works for us.
I have melted precious organic gfcf chocolate, mix into some rice crispies for some crunch and add the supplements in. And chill them in tiny paper cups like candy. It worked beautifully for 1 day. The next day onwards she refused anymore chocolate. Because both the girls don’t like soft slimy food, I couldn’t try adding supplements to jelly. One desperate day, I mixed some of the more bitter supplements into ice cream – this worked the best! However, there are no GFCF ice cream available in Malaysia so the thought of giving Maya dairy-filled ice cream everyday went against our GFCF principles. I’m still considering buying an ice-cream maker, hopefully I can create a delicious homemade GFCF ice cream.
I bought a box of colorful straws and this worked wonders in getting Maya to drink the supplements mixed with juice in a cup. Everyday she would request for a particular colored straw and will happily drink the supplements. She may not drink it all in one go, we would still have to chase her around the house and coax her to drink it all up bit by bit. Slow but steady I say.
We enlisted the help of our wonderful ABA team to start a tolerance program for taking supplements with a syringe. We supplied the team with a large box of 5ml syringes and the team got to work. After a couple of months into the program, it seemed to me to be a complete waste of time and precious syringes. Maya would only tolerate taking water from a syringe if it was from a therapist, she refused to do it with us at home. It has now been 3 months since Maya started the program and this week we managed to give her supplements in a syringe! We have managed to give her 3 different types of supplements in a syringe, but there are still 20 more to go. Perhaps next year we will do a program to teach her to swallow tablets using ABA.
Maya has always had an intense fear of syringes, ever since very young. She would run away screaming whenever she saw a syringe, she would be so scared and agitated she was inconsolable. We still have to smuggle in supplements in milk bottles at midnight, however there has been great progress.
For any parent feeling frustrated trying to figure out how best to administer these many supplements, only know that the gains and benefits are enormous. Every precious supplement that you successfully manage to give your child is another step closer to improving his health and mind. By being creative, consistent and resilient, you will find what works best for your child.
Don’t feel discouraged, you can’t compare your child to Maya. Don’t compare your child to the neighbor’s son who learnt to swallow tablets at 4 years old. Don’t compare your child to your nephew who’s compliant and meekly takes any vitamin given to him. Each child has their own preferences, each child has their own diagnosis to battle with. Also remember that it took us 9 months to get to where we are now. It has been some time since Maya rejected a milk bottle complaining of the taste. I feel an enormous sense of pride for Maya, allowing us to put the much hated syringe in her mouth and swallowing those nasty tasting supplements. She is the one who has worked the hardest, her accomplishments and improvements are testimonial to her strong spirit and amazing strength.

>Whizz Trip

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>I came back from another smuggling run to Singapore, instead of poop, this time it’s wee. I sent in Yasmin’s urine sample for the Organic Acid Test, hopefully this will shed more light into her ever increasing sensory disorder.

Paul was away on a business trip, so my parents were kind enough to stay with the girls. I took the opportunity to stay overnight in Singapore, hoping to have some time to rest. To stay in a nice hotel, sleep through the night uninterrupted and having room service is such a treat. Thoughts of having enough time to finally do some shopping for myself was thrilling, usually my Singapore trips are so hectic.
I took the evening flight down to Singapore, the flight was delayed by more than an hour. Once landed, went straight to Dr Erwin’s clinic with huge empty luggage in tow. Stocked up on 1 month’s worth of some of the supplements for 2 girls and delivered the urine test kit. Then jumped into a taxi to the hotel. It was past 9pm when I finally got into the room. Had a couple of hours watching all the downloaded tv shows I had been missing and ordered room service. There was a lovely rain shower, but the hot water controls were not working. Maybe it was too high-tech for me to figure out.
All night I kept jumping out of bed to wrestle with the air conditioning controls, it was either too hot or too cold. Unfortunately the hotel was undergoing renovation, so the room smelled of paint fumes, I had to place towels under the door. I was awakened by construction noise at 9am on the dot, it was time to start the day anyway. No wonder the 5 star hotel on prime Orchard Road was giving big discounts on their room rates.
There were other supplements that Dr Erwin does not stock, so we usually have to source them from several other different shops. Because things tend to start late in Singapore, all the shops and places I needed to go only opened at 10.30am or 11am. Then it was a rush to get to all the places before I needed to check out. Luckily I managed to wrangle a late check out. Every where I went, I ended up with big heavy bags of supplements and foodstuff. Some had to be kept refrigerated so more time was taken to go back to the hotel so I could store it in the fridge. I finally managed to finish everything by 2.15pm. And I still managed to pop into my favorite shoe store and walk all the way back to the hotel because the taxi queues were so long.
Even though I brought a big suitcase, I still struggled getting all the shopping in. I was pretty annoyed that some of the biscuits and foodstuffs I bought were crushed, the bag was full. It’s amazing how much money flies around every time we do these Singapore trips, the cost of 1 month’s supply of supplements and foodstuff for 2 girls is astounding. However, it’s still cheaper than ABA.
Even with an overnight stay without the kids in tow, it was still a whirlwind trip. There’s just so much to do crammed into so little time. Maybe next time I’ll fly to Singapore in the morning.

>KL Biomed Support Group 10/10/09

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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, the address and location map will be sent to you once you have confirmed your attendance.

Time: 9.00am – 11.00am
Date: Saturday, 10th October 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. 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 Thursday 8th October 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!

>Maya's Progress

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Having done a recent psychological evaluation, we are gratified to see on paper an accurate and comprehensive overview of Maya’s progress and how far she has come. Maya was diagnosed with Mild to Moderate Autism in June 2008. After over a year of early intervention, we have seen many improvements in Maya. Here are some of the details from her recent assessment compared to previous tests done.

Intelligence & Mental Development – Maya’s IQ is now 107 which falls within the Average range. 1 year ago, her IQ was 77 which indicated a Borderline score.
Auditory and Expressive Language – Maya is now communicating at her age appropriate level of 3 years 9 months at the time of the assessment. She has made 1 year and 2 months progress in her language ability in 7 months.
Adaptive Functioning – Maya’s level of communication, daily living skills, socialization and motor skills has increased overall to 88, which indicates Adequate Adaptive Functioning. 1 year ago, she scored 67 which is in the Low range of functioning with Mild Deficit.
Getting to where we are now has been tough, we have cried blood, sweat and tears and sunk in enormous amounts of money and resources. We have suffered many personal and professional setbacks, made sacrifices that no one else could understand except perhaps for another parent with a special needs child. The monetary cost, sleepless nights and emotional toll it took may never be recoverable.
Some people have asked us whether it was ABA or biomedical that made the difference for Maya. It was both. The biomedical treatments has healed and repaired some of the damage in Maya’s body. A healthy body is a healthy mind. This in turn allowed Maya’s mind to better concentrate, absorb and learn, making ABA more effective. Maya’s progress has been rapid in the past 9 months, which coincided with us intensifying her biomedical treatments as well as increasing her ABA hours. I do not know whether this is considered `normal progress’ or exceptional progress, however a combination of intensive ABA and intensive biomedical intervention is what works for now.
I am amazed at the strength and resilience of my daughter, she overcame all odds that came her way. She continues to struggle with many debilitating aspects of Autism, throughout it all her naturally sweet and gentle personality still shines through. The glowing assessment report couldn’t have come at a better time. Constantly battling Autism every single day has left us battered, weary and drained.
We celebrated the good news with a long overdue holiday in Phuket. Even though it was monsoon season there and rained continuously, we all had a wonderful time. The girls especially loved breakfast time with the baby elephants every morning. We still have a long road ahead, but at least we know that we’re heading in the right direction.

>Life After Diagnosis – 2nd Time Around

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A lot can happen in 2 weeks; even though Yasmin’s diagnosis was not totally unexpected, the shock and grief for us is still as strong as it was with Maya. And for most parents in our situation, having 2 children on the Autism spectrum (though one is borderline) means that you don’t have the time to grieve. Now there’s 2 different sets of supplements to dole out everyday, both with different biomedical protocols and behavioral issues to deal with.

Because of the many colds and flu viruses running around, both girls have had to deal with fevers, colds, coughs and sometimes all 3 at once in the past 1 month. When sick, appetites has waned and suddenly they’re spitting up the supplements that they used to take obediently. Having missed up to 1 week’s worth of supplements has made a huge negative impact especially on Maya. Suddenly, from a girl who’s so sweet and well-behaved, Maya has regressed and showing some of the behaviors that we thought are long behind us. She is experiencing anxiety and non-compliance in school, starting to tantrum at home, a lot of climbing and jumping and meltdowns. By missing some of the key supplements, her yeast issues have come back amongst other things.
She now refuses to wear clothes, screaming whenever we try to dress her. At night she would strip off her pyjamas and at times even her nappy. Seeing our daughter curled up sleeping naked in bed, freezing because the air conditioning is on and she had thrown off the blankets, is a very disturbing image for Paul and I. The past 1 week, she has started to wake up at nights, wanting to play and sing for several hours. She would wake up tired and too sleepy to perform well at school.
After seeing Dr Rina, we immediately started Yasmin on her antibiotics, anti-fungal protocol and healing her gut issues. And for the first 10 days, we did not see any behavioral improvements in her, mostly due to the die-off reaction. We also noticed more repetitive behaviors in Yasmin such as opening and closing doors and drawers, a lot of patting and knocking and tiptoe walking. However, she started to sleep through the night, her appetite is really good now and she hasn’t had any constipation lately. In the past 3 days, we noticed that Yasmin is no longer cranky and upset. She is happy, calm and smiling. But the self-stimulatory behaviors are still there.
Needless to say, both Paul and I have not had a full night’s sleep for a long time. We are mentally and physically exhausted and the many worries running through our minds are too long a list. We are going through a particularly rough patch and we will get through this. Our focus now is to get Maya back on track on all her supplements, increasing her anti-fungal protocol and try to deal with the tantrums and behaviors with patience, grace and strength. I will try to look past Yasmin’s behaviors and stims, not to freeze in fear that with every tiptoe or knocking, that Yasmin will not get a little closer and cross the threshold that is Autism.
Both Maya and Yasmin are the biggest joy in our lives, we show them our love each and every day. They are blessed to have a father as wonderful as Paul. He is strength, patience and love. Amidst all the chaos and uncertainties that surrounds a family affected by Autism, he has been our rock. He is Warrior Dad.

>KL Biomed Forum

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>There is now an active forum on Yahoo Group where Malaysian parents can post queries or information regarding biomedical intervention. KL Biomed is a forum for parents of children with Autism Spectrum Disorder who are doing biomedical intervention in Malaysia. Members can post questions to the groups and any member can reply. Group members are also welcome to post relevant materials and information with regards to biomedical.


This is a private group intended as a form of communication and sharing of knowledge with other parents. Any advice given in this forum is not to be construed as medical advice. So far, we have had many postings and queries relating to diets, medical testings, nutritional supplements and DAN treatments.


>Blood Draw

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Recently we were in Singapore to do additional tests which requires a blood draw. Dr Erwin did a remarkable job, he found a vein quickly and managed to take 6 vials of blood within 10 minutes. Maya was of course very upset, she cried, screamed and struggled. I placed her sitting on my lap facing me, one arm placed on a cushion on the doctor’s desk and Paul held onto her wrist. I hugged her close to me trying to keep her still. Through her crying, Maya managed to say “Please don’t hurt me” , “Let me go” “I’m not sick” and “I need a band aid”. She was a little bit calmer during the 2nd half of the blood draw. She was still upset, but didn’t struggle much.

Unfortunately, by the time the 3rd vial was filling up, Paul started to turn a little white (yes, whiter than he already is) and he kept asking how many more vials was needed, whether we needed all that blood and on and on. Some blood managed to spill and seep through pass the needle and flowing down Maya’s arm by that time. Immediately once the doctor pulled out the needle, Paul rushed to the sink and washed his face. And while the doctor was cleaning Maya’s arm, Paul suddenly squatted down on the floor, breathing rapidly. The doctor was very concerned, he stopped patching Maya up and asked Paul if he was ok. Dr Erwin and I were sure that Paul was going to faint.
However, my heroic husband did not `pengsan’ but all that blood made him feel very queasy. The fear and concern he felt for his daughter was so great that he couldn’t hold on much longer. It took him sometime to recover from the ordeal, however Maya was up and running and forgot all about it 10 minutes later.
We did several tests which measured viral titers, red blood cells minerals test, fatty acids and many others. We are looking forward to receiving the test results so we can go further with Maya’s treatment. But for the moment, we are glad that the blood draw went well and we really hope it was worth all the pain and trauma. I am so proud of my big brave girl.

>All About Yasmin

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My second daughter Yasmin is 2y5m, she was a happy easy-going baby, she fed well, slept through the night and pretty much a normal child. Her language and cognition is very good and she’s very affectionate. However, for the past 6 months we have noticed a gradual change in her behavior, she is often cranky, shows rigidity in behavior, uncontrollable at times and rarely smiles. Also, she started to have sleep problems, is now a very fussy and picky eater, chronic constipation and shows a lot of abdominal pain. We also noticed some stims such as tip toe walking, slight repetition in language and motion, always tapping and knocking on walls or furniture, she is always climbing on the arms of the sofa, straddling it while rocking her body and grinding her pelvis against it and we have noticed some eye stims recently.

However, throughout all this, her language and cognition has always been very good. But Paul also pointed out that we have not seen any developmental gains in the past few months, she is still at the same developmental level as she was 6 months ago. Because of what we went through with Maya, we also understand the genetic susceptibility of siblings getting the same condition. So we took steps to reduce the possibility of it; we put Yasmin on the GFCF diet for the past 9 months, she is also soy-free and egg-free. Her diet is organic and pretty much the same as it is for Maya. We did not give her the MMR however she did receive some vaccinations prior to it.
In January 2009, both girls were hospitalized for Rotavirus. Both Dr Erwin Kay and Dr Rina Adeline suspect that her regression was induced by the infectious and bacterial disease. There are many causes of Autism, we now believe that the Rotavirus tipped her over the edge. I also believe there she also contracted other countless bacterial and viral co-infections that were never tested, identified or treated for. We were on holiday in Phuket and Paul took the girls to play under the water sprinklers in the hotel garden. I kept asking them to stop because the water smelled putrid, plus the Thai gardeners kept shouting and gesturing at them to get away from the garden. We later found out that the filtration system is broken and water contaminated from the septic tank was used. Yeah, dumb but true. 2 days after we came back from Phuket, first Yasmin and then Maya was hospitalized. They were treated for Rotavirus, but it’s interesting to note that they were not tested for other types of infections or viruses, the doctor only tested for Rotavirus.
We did the IgG Food Intolerance test and the Comprehensive Stool Analysis. Her IgG levels are elevated with multiple food intolerance, she also has leaky gut, there are multiple bacterial infections, yeast overgrowth, digestive enzyme deficiencies, gut inflammation, oxidative stress and others. Her medical prognosis is chillingly similar to her sister’s, in fact some of her test results are worse than Maya’s.
Both DAN doctors confirmed that Yasmin is either borderline ASD or gradually declining towards the Autism Spectrum. We don’t know whether it will be Autism, ADHD or Aspergers, but I’m not waiting to find out. We are doing all we can to stop it now, starting with her gut issues. We have not done a psychological assessment, mostly because of time and financial constraints, but also we do not need a clinical psychologist to tell us what we already know. Also, some people including doctors are very quick to judge us as overly-worried parents because Yasmin’s language skills are amazing. And it’s unfair that because for the 5 minutes someone observes her, they come to the conclusion that she’s fine. As if that can be construed as a `qualified diagnosis’.
Yeah, but did they ever consider that during that 5 minutes, she is so engrossed with a new toy, chatting happily away, laughing and everyone is giving in to all her demands that she is not likely to throw a tantrum? No one else would know that it takes us such a long time to calm her down or redirect her when she’s in one of her tantrums and rages? No one else has to get her to stop humping the furniture, if they did then they’ll know that this is not `normal’ behavior. No one outside the family has ever experienced a night when she wakes up at 3am and wants to play for 3 hours. It’s come to point now that sadly, our officially-diagnosed ASD child Maya is so much easier and better behaved than Yasmin.
As parents, we shouldn’t let ourselves be blinded by Yasmin’s cleverness and precociousness. I could never avoid noticing some of her abdominal pain behaviors, she would insist on me holding her tummy, she would lean over tables and bed corners, pushing her tummy into it. I can’t help but notice that she is constipated for 5 days, her stools are always either very hard and pebbly or runny and soft. Her tummy is distended and she is extra irritable and cranky during constipation days. Her constant knocking and tapping is a sensory issue and also signs of calcium deficiency. Yes, a lot of her behaviors are considered normal 2 year old behaviors, but all together at once and there’s a sibling with ASD? Come on, I’m an Autism Warrior Worrier Mummy, you can’t fool me!

>B12

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Vitamin B12 therapy is one of the most popular treatments in Autism biomedical intervention. B12 is utilized in almost every cell in the human body, it affects the normal functioning of the nervous system, the detoxification system and other biomedical pathways. Most parents report almost immediate improvements once starting B12 therapy. To read more about the benefits of B12, please refer to the article at this link http://www.talkaboutcuringautism.org/medical/methyl-b12-treatments.htm
You can also watch videos by doctors and parents on how to administer methyl B12 shots. Just do a search on Google or YouTube for Autism B12 Injections and you will find many videos. Your doctor will also teach you how to do the shot, Paul and I also practiced injecting into an apple before we did it for the first time on Maya.
We saw huge gains in maya’s language and cognition and overall behavior. 7-8 word sentences are used frequently. Maya now strings 2-3 sentences together. She easily follows 2 step instructions. She is able to answer questions that she previously could not understand eg. “What did you do at school today?” and “Who did you play with?” . She makes new requests such as “Mummy, can you turn on the lights please”. She asks us questions like “Daddy, what are you doing?” Also, “No, I don’t want to go to school. Let’s go to the zoo!”. Her behavior is more appropriate and we saw improvements in her social skills.
There are many forms of administering B12 – oral, transdermal, nasal or subcutaneous injections. Most of our children have issues with malabsorption, therefor oral types such as capsules and lollipops may not be the best option. Yes, lollipop version of B12 – Stan Kurtz created a lollipop called Revita Pops. You may need to check with the website on where to purchase them. Check out www.revitapop.com
There is also several types of MB12 Nasal Spray, however this may not be well accepted for younger children. Transdermal B12 may take the form of creams or patches.
According to research and parents’ feedback, the most effective form of administering B12 are injections. For injections, the methylated version of B12 is used, thus usually referred to as Methyl B12. It is also known as Methycobalamin. Subcutaneous injections requires thin and short needles, the shots are very shallow, usually on the upper outer quadrant of the buttocks and taken at an angle of 30 degrees or less. Because the shot is given just under the skin, you don’t penetrate it into deep fat tissue or muscle tissue, it doesn’t get into a vein, a nerve or artery.
Depending on your child’s weight, the doctor will usually prescribe 0.03mls per shot. It’s a very tiny amount. Frequency will vary according to doctor and child, usually every 3 days. You have a choice of either getting the B12 in a multiple-dose container or prefilled syringes. Your doctor can order both from a compounding pharmacy. You will need to store methyl B12 in the refrigerator and keep it away from the light.
Multiple-dose container – A single vial may last you 2 months or more depending on your dosage and frequency. It’s more affordable compared to pre-filled syringes. You will need to wrap the vial in aluminum foil in order to protect it from the light. Also, if you find that the dosage recommended by the doctor doesn’t seem to be effective, you can adjust the amount easily. However you will need to purchase your own syringes and fill it up yourself. Dr Erwin Kay sells methyl B12 at SGD$180 per 3ml vial. You can purchase BD Ultra-Fine Insulin Syringe 1/2cc at any pharmacy in Malaysia, a pack of 10 syringes are RM5-10. These needles are the same size ultra-fine, however at 1/2″ it is slightly longer than pre-filled syringes. You just have to exercise more control during the injection to make sure the needle doesn’t go in deeper.
Pre-filled syringes – this reduces the hassle of filling up the syringes yourself every time. It’s very convenient and you know the dosage is correct. However there are 2 drawbacks; firstly it is a lot more expensive – 1 pre-filled syringe may cost SGD$10.00 – SGD$20.00 each. Depending on which compounding pharmacy and the US$ currency exchange. Your DAN doctor can give you the exact figure.
Depending on how often your doctor recommends you to do it, the cost can be very high. Secondly, because it is pre-filled, you may not be able to adjust the amount of B12. The needles are ultra-fine and best of all, the needle length is 1/4″. This is the perfect depth for subcutaneous injections and you are assured that it will never go in too deep.
We have been giving Maya methyl B12 shots for 2 months. For the first 1 month, we did it every other day. Dr Erwin initially prescribed 0.03mls however we did not see any improvements within 1 week. He then advised us to increase the dosage to 0.04mls and we saw amazing improvements within 1 hour! We now give maya methyl B12 injections 0.04mls every day. We did not get pre-filled syringes, instead ours came in a vial.
At SGD$180 a vial, for 0.04mls every day, I calculate our cost to be RM200 per month for B12 therapy including the cost of the B12 3ml vial and syringes. Definitely worth the money and the initial struggles.
Initially it was very hard, Paul would hold Maya tightly and she would be screaming and fighting and wriggling and kicking, whilst I’m trying to inject her at the proper angle, at the proper spot at the shallowest depth possible. Maya would start screaming and struggling the moment I swabbed her bottom with the pre-injection swabs. The injection itself is very quick and I try to find interesting plasters or band-aids. She would then cry for 10 minutes while we comforted her and redirect her.
Eventually, the cries got less and less and for the past 1 month, Paul doesn’t even have to hold her and she doesn’t cry at all anymore. I tell Maya “It’s time for Doctor Mummy” and she’ll bend over the bed willingly and will keep still while I give her the shot. Usually we have a discussion about what plasters she’ll get today, her favorites are the Disney princess ones:-) The whole process takes less than 1 minute.
To save time, I usually fill up to 10 syringes at once and cover the needle with the needle shield. Then I make a little parcel made of aluminium foil. In every piece of foil, I place 1 syringe that I’ve pre-filled to the correct dosage, 1 swab, 1 cotton ball and 1 plaster. And I roll up everything together making sure that the plunger is well protected and not going to be accidently pressed. And everyday I just grab a parcel from the refrigerator so it’s quick and easy. And that’s how I make my own pre-filled pre-prepared B12 shots.
Depending on your child’s underlying medical issues and personal preference, you can talk to your DAN doctor about which forms of B12 are best for your child.

>4 DANs and Counting

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>So far, Paul and I have seen 4 DAN doctors. All 4 are medical practitioners of varying backgrounds and specialties and they’ve all done different levels of Clinician’s Training with Defeat Autism Now!. And what we found is, every doctor have their own unique perspective, different sets of priorities, different treatment modalities and testing requirements. There is no better or worse, you choose a DAN doctor for your child based on certain criteria.

Qualification and DAN! certifications are not the most important criteria. I choose my doctor based on convenience, geographical location, testing methods, personal preferences for supplements, preferred testing labs and the doctor’s bedside manner. These are all important because you will have to build a close relationship based on trust and respect throughout this long journey.
Paul and I have consulted Dr Sundardas and Dr Erwin Kay in Singapore, Dr Rina Adeline in Indonesia and globe-trotting Dr Mark Westaway for Maya. We consulted Dr Erwin Kay and Dr Rina Adeline for my second daughter Yasmin.
Dr Sundardas is a Naturopath. We stayed with him for only 3 months because he did not address Maya’s gut issues, which I felt is a very important part of her treatment. He did not propose the IgG, Urine Organic Acids or Comprehensive Stool tests the entire time we saw him. His main area of concern with Maya is her heavy metals toxicity.
Dr Erwin Kay is our principle DAN practitioner, he is conservative in terms of testing and most importantly he really listens to our opinions. He orders his own test kits from ARI recommended labs and sells supplements from Kirkmans, Prothera and Klaire Labs. It is really convenient because I can do consult, testing and get supplements from him directly. He concentrates on Maya’s gut issues, nutritional supplementation and overall treatment.
I met Dr Mark Westaway at the DAN Conference in Atlanta in April 09. He is Australian, previously based in Brisbane. Then he worked in Breakspear Hospital in the UK. Recently he told us he will be based in the US because he was invited to do Autism research in Harvard. We never know where he’ll be next. So he may not be able to provide consultations for us very often. However, we still keep in touch via email. He only provides consultations, you will need to find supplements elsewhere. He will also give prescriptions when needed and you will need to purchase it from an Australian pharmacy. He doesn’t do testing either, he will just give you a list of tests he requires and his preferred labs but you have to contact those labs directly. His main area of focus with Maya includes biofilms and oxidative stress. He also stresses the importance of reducing EMFs (electro magnetic fields) around our children.
Dr Rina Adeline from Indonesia has been to the several DAN conference including the latest one. She has also done the advanced training with DAN. She requires her patients to do extensive tests, which you will have to do with an independent lab for blood draw. And you will need to find supplements from pharmacies and speciality shops. We have seen her only once however we plan on consulting with her occasionally every few months. Her main area of focus with Maya are viral infections and autoimmunity.
Maya has all the above issues (and more) and they all need to be addressed. It’s just a matter of professional interest and personal priorities which issues are to be addressed first and concentrated on. Some may find all these differing opinions confusing, however paul and I really appreciate each and every doctor we have met. We value 2nd opinions and each doctor gives us a fresh perspective as well as treatment options that may not have been available in another country.
On our next trip to Sydney, we plan on meeting one of the most respected biomedical doctor in Australia. Holistic and natural remedies are also very popular amongst Australians and we are curious how biomedical treatments there differ. We’ll keep you posted on what he has to say!

>Singapore vs Indonesia

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Because there’s no DANs in Malaysia, us parents have to look elsewhere for biomedical treatment. Singapore and Indonesia would be the closest choice. You’ll need to take into account not just the cost of consults, tests and supplements, but you should also budget for travel and accommodation costs. Some doctors prefer to see patients every month whereas other doctors are happy with every 2 or 3 months. Except for the first initial consult and when you need to do a blood draw for tests, you don’t need to bring your child every time.
For Singapore, you have a choice of flying – Jetstar is the cheapest. Driving down takes only 3 1/2 hours and you can even travel by Executive Bus. There are times when we drive down with the whole family and stay the weekend in Singapore, but there are also times when I fly down alone for a consult with Dr Erwin, pick up the supplements and catch the next flight home.
There are many hotels and service apartments at different price range. You can even stay in JB. Somerset has several serviced apartments around Singapore, our favorite is Someset Grand Cairnhill. They have very spacious 2 and 3 bedroom apartments, a nice pool and a playground area for the kids. It’s 1 minute walk to Orchard Road so it’s really convenient for food and shopping. Contact Somerset directly for the lowest rates, no minimum stay required if you book directly with them. http://www.somerset.com/singapore/singapore/somerset_grand_cairnhill.html
Dr Erwin Kay only practices from Singapore 8.30am – 1.30pm and 7.00pm – 9.00pm Tuesday and Thursday, Saturday from 8.10am – 1.30pm. He sells supplements and conducts the tests himself. He prefers to see his patients every month. He can also do Skype consults.
Dr Rina Adeline practices from Jakarta, Medan, Pekan Baru and several other locations around Indonesia. She also does online consultations with yahoo messenger. However, you will need to purchase the supplements and medications from independent shops and pharmacies in jakarta or elsewhere. And for all tests, you will need to go to the lab directly. Strictly speaking, her clinic is not in jakarta, it is a 2 hour drive (depending on traffic) in a satellite town called Bogor. You can call her clinic directly for her schedules or appointments. www.kibm.org Telephone: +62 21 84934186.
For Jakarta, KLM Airlines is the cheapest. There are also many price range of hotels, you’ll also need to hire a car and driver.
John Yeo also conducts a clinic in Johor Bahru every Wednesday. Please contact his clinic directly for details. www.autism-nutrition.com Telephone: 02-62536257
When choosing your DAN doctor, please remember that it is not going to be a one-time trip. Biomedical treatment requires many consultations, you’ll need to go back to that country or doctor to purchase the supplements. There is not a vast difference in consultation and supplements cost, however travel and accommodation costs will vary according to country.

>KL Biomed Support Group 1/8/09

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I’m pleased to announce that there is now a support group for parents doing biomedical in Malaysia. The first KL Biomed Support Group will be held on Saturday, 1st August 2009 from 10am – 12pm.

We are a small group of parents of children diagnosed with Autism Spectrum Disorder based in Kuala Lumpur. And we are starting a support group for parents who are doing biomedical intervention for their children. The first one will be held next week, the details are as below. The primary focus of this group is to share knowledge and provide support for parents who are either already doing biomedical treatments or about to start biomedical intervention. For our first support group meet, topics will include GFCF diet, how to choose a DAN! doctor and general discussion on biomedical treatments available in Malaysia. 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.

Time: 10.00am – 12.00pm
Date: Saturday, 1 August 2009
Contact person: Marissa
Email: vmarisd@gmail.com

Please email me directly if you wish to attend. I will then give you further details of the location. I hope to see you there!