>My Top 10 Favourites……

Posted on July 20, 2010 by Admin

There are several supplements and treatments that come high on my list of favorites. Every parent has their own list, it differs from child to child. I would like to share what were the top supplements and treatments that have made the most impact in my children.

This is a list of our Top 10 favourite treatments;

1. Methyl B12 – Maya showed amazing leap in language abilities. After reading up on the benefits of B12 and the many types of administering, I decided straight on that I wanted that is proven to be the most effective ie the methylated form of B12 ie. Methylcobalamin. Extensive studies have shown that subcutaneous injections of methyl B12 to be far superior to other forms eg. Transdermal, nasal or oral. Though we were horrified at the thought of injecting our girl almost daily ourselves, we keep repeating the mantra “A few seconds of pain, a lifetime of happiness” every time we did it. It has been 1 years since we first started, and we will continue to do so as we still notice a difference on the days that she misses a shot for a day too long. We are now doing preservative-free MB12 at 0.05ml 3 x weekly. Take note that MB12 needs to be done as a part of an intensive biomedical protocol, it is not a 1st tier supplement and you need to consult a Biomed doctor as to whether it is appropriate for your child and when is the best time to introduce this. MB12 is available from specialist compounding pharmacies, please order it through an experienced DAN doctor. Other doctors may not know the difference between the other types of injectable B12s. Also, MB12 must be introduced at the appropriate time, you must work towards prepping the body for it. Otherwise you either end up with no improvements at all or worse, more hyperness. It is available in either pre-filled syringes or in vial form. I prefer in vial as it is a lot more cost effective compared to pre-filled syringes.

2. Diet – gfcf, egg free, soy free. We did a period of low-sugar for 6 months, that helped a lot in reducing the yeast overgrowth. We only tried corn-free and low salicylates diet 9 months after starting intensive biomedical, but by that time Maya had made tremendous progress. So any benefit if any seemed inconsequential. Subsequently after 2-3 months trial, we went back to the normal GFCFSFEF diet. For now, we still continue the GFCF diet though on special occassions with occasional gluten allowed. Even until now, we noticed almost immediate behavioural regression whenever she has casein.

3. Probiotics – we do high dosage multi-species casein-free, strep-free, refrigerated probiotic formulations. Dosage ranged from 20-100 Billion CFU depending on what protocols we were doing at that time. Our kids need high doses of many types of Lacto and Bifido strains. After some time, we found that probiotics containing strep strains eg. Kirkman’s Probio Gold and Klaire Labs’ Therbiotic Complete weren’t suitable for my girls as strep-free versions. I now rotate between Klaire Labs Therbiotic Detox, Custom Probiotics and New Beginnings Probitics. I also love Culturelle, a casein-free version of Lacto GG. This is effective in fighting clostridia. Klaire Labs products are only available through doctors, other brands can be purchased anywhere.

4. Anti-fungals – From the very first anti-fungal protocol we did, Maya showed amazing improvement every time. It took several rounds of different anti-fungals to finally keep it under control, however from time to time we still need to address yeast overgrowth. Diflucan, Ketoconazole, Nizoral, Augmentin, Sacchromyces Boulardii and Candex are some of our favourite anti-fungals that have been particularly effective in our girls. There were others we tried, but due to the taste, we weren’t able to follow the protocol as set by our doctor. We always keep stock of S.Boulardii, I rotate between Klaire Labs and Kirkman’s. As with nearly every treatment, please consult with your doctor when implementing an anti-fungal protocol.

5. TMG – this is a methyl donor, important in the methylation cycle which is frequently impaired in ASD children. As usual, we started at a low dosage and slowly worked up to the maximum dosage. However, we found that Maya only needed 3/4 of the dosage, 750mg seems to be the ideal amount for her. She could finally tolerate wearing clothes and was no longer agitated when wearing clothes. She was more compliant when dressing and started to wear blouses with sleeves and wearing pants. Before this, she only wanted to wear dresses with thin shoulder straps. Best of all, we saw a huge leap in potty training. You have a choice of either TMG or DMG, depending on your child’s needs, please consult a doctor on which one is suitable for your child. After trying several formulations, I prefer to stick to single formulations rather than mixed ones. You can find TMG mixed with B12 and Folinic Acid. However, some DAN practitioners do not approve of oral B12. I now use Kirkman’s TMG

6. OSR – also known as Oxidative Stress Relief, this is a powerful antioxidant. After 3-4 months on OSR, Maya’s oxidative stress levels went down to normal range. Previously, she was “Oxidising like crazy!” as said by Dr Mark Westaway. We only used this for 4 months and during those months, Maya kept progressing and improving almost daily. OSR is available from Lee Silsby Compounding Pharmacy and can only be ordered by a doctor. In South East Asia, for the moment only Dr Erwin Kay stocks this.

7. 5-HTP – we only started using 5-HTP only a few months back. From seemingly out of nowhere, Maya started presenting negative though processes and had a lot of anxiety issues. She was very moody and obsessed with dark, spooky stories. We tried several interventions with no luck, however the moment we started her on 5-HTP, the negative thought process and anxiety disappeared. I was still sceptical, and recently w
e ran out of 5-HTP for a few days and true to form, the anxiety and moodiness returned. This is a supplement that we make sure we never run out of these days. I use Klaire Labs 5-HTP

8. Magnesium – physical symptoms and test results showed that Maya was deficient in Magnesium. Not only that, her body seems to be excreting it quite fast compared to other minerals. Magnesium has helped her in many ways, mostly it’s calming properties ensure that she’s calmer and sleeps well. It also relieves her constipation. After trying many many formulations, we finally found one that tastes good. Most Magnesium Glycinate tastes horrid! ASD kids are recommend to take Magnesium Glycinate, rather than other forms as it is the least irritating to the gut and well absorbed. Our favourite is Kirkman’s Magnesium Glycinate Powder Biomax.

9. Transfer Factor and Colostrum – these are immune `enhancers’. They are 2 very different products, but both seeks to modulate the immune system by transferring the correct information to our immune system. Colostrum is bovine-derived and contains casein, however the benefits far outweighs the casein issue. Transfer Factor is a class above Colostrum, it works rather differently. My girls are prone to colds, flus, fevers and other infections. However when I started to use both these supplements together, we have a miraculous illness-free period for several months. Unfortunately, whenever we run out of stock, my girls get sick again. I use Kirkman’s Colostrum Gold. Dr Erwin carries Researched Nutritionals’ Transfer Factor. I am trying to source other brands of Transfer Factors as they always run out of stock.

10. Digestive Enzymes – DPP-IV and Phenol Assist are one of the first supplements to start on. Most ASD children are very deficient in DPP-IV, an enzyme that processes casein and gluten. It also plays an enzymatic role in the immune system, though it is called by another name. Phenol Assist helps to digest phenols, oxalates and salicylates. After a long time on a strict GFCF diet and daily doses of DPP-IV and Phenol Assist, late last year, we went on holiday. We allowed both girls to have all the gluten, casein and junk food they want. We also made sure they have lots of DPP-IV and Phenol Assist. Neither girls had any bad reactions to the lapse in diet. I use Kirkman’s Enzyme Complete DPP-IV with Isogest and Kirkman’s Phenol Assist. I have tried other formulations, but the girls didn’t like the taste of them eg. Trienza, No-Fenol. So, we continue with what works for them and what they can tolerate the taste of regularly. Digestive enzymes cannot replace the importance of a strict GFCF diet, as well as restrictions in oxalates, phenols and salicylates.

There were a lot more supplements we have tried, on any given day, my girls take an average of 20 supplements daily. And throughout the years, we have tried supplements that have given us amazing results, as well as those who caused the worse regressions. Though biomedical intervention done well is backed by evidence-based medicine, research and through testing, at times we will not know how well a child will respond to the treatment until we actually try it. What may work for my child may not work for yours. Please work closely with an experienced biomed doctor, first and foremost keep your child’s health and safety in mind, keep yourself educated, keep track and monitor each and every day. Most of all, keep a positive outlook. Good luck!

>More Recovery Stories

Posted on July 20, 2010 by Admin

>In the past few years of living in Autism-Land, many people have come up to me and said that they have never heard of recoveries in Autism. We are told that Autism is a life-long disability and that behavioral therapy is the only treatment available. Before Maya was diagnosed, I have never even heard of Autism (except for Rain Man of course) therefor I didn’t have much of a pre-conception about the prognosis. The first ever book I read which also gave me an inkling that Maya probably had Autism was by Jenny McCarthy. Her son recovered from Autism. When we finally received Maya’s Autism diagnosis, I vowed that I will recover Maya. If Jenny can do it, so can I. Whether we live in USA or Malaysia, Autism is Treatable. Please read the article below courtesy of my favourite Autism magazine, The Autism File.

No Longer Autistic by Lisa Mize
Courtesy of Autism File

>Treatment Protocol Plus A Dose of Fun

Posted on July 18, 2010 by Admin

With every treatment or supplement we do, we always do it with the advice of a medical doctor. We follow the set protocol and usually get 2nd opinions on nearly everything. I don’t try out anything without a doctor’s recommendation or advice, I am very conservative and like to go slow and steady. I never start more than 2-3 new supplements in 1 month. I always start at a low dose and slowly work up to the recommended dosage. We keep meticulous record of everything we do and keep track of any side-effects, bad reaction or improvement made with each supplement or treatment. Though a lot of parents are brave and bold enough to implement a treatment or do biomedical treatments without the guidance of a doctor, I’m quite conservative. Slow, safe and steady has been our approach and so far, it has served us well. To a lot of other parents, my approach is very slow and far too conservative for their liking. However, we all have our trusted methods, this so called “slow” approach has given us tremendous progress. This is a brief overview of our treatment plan since we started biomedical treatments.

As you may know, we started on the GFCF diet and didn’t pursue biomed for another 6 months. Once we started intensive treatment, sleep and constipation was high on our list of priorities. Then I wanted to address Maya’s other gut issues. Next, we started on our first round of anti-fungal treatments, this is one of her biggest problem. At the same time, we addressed her oxidative stress. We then addressed her inflammation as well as implemented a biofilm protocol. After that, we worked towards prepping her for MB12. We finally found the right dosage and frequency for MB12 and saw amazing results.

We have done several tests at different points in time, some more than once depending on the need. We tried an anti-viral treatment with good results, but we couldn’t pursue it further for the moment and had to be put on hold. We then concentrated on her methylation cycle – all the methyl donors eg Taurine, N-Acetyl Cystein, Folinic Acid, TMG and MB12 worked amazingly well for her. Each supplement showed good reactions; Maya was calmer, there was a sudden leap in clarity, cognition and language. We continuously had to address yeast overgrowth from time to time. We were also working towards balancing her immune system. We also investigated strep for possible PANDAS (Paediatric Autoimmune Neurological Disorder Associated with Streptococcus) though thankfully this turned out to be negative. Her long-term issue with dressing and wearing clothes were addressed, as well as finally able to toilet-train.

From time to time, some new issues would come to the fore such as her negative thought process and recurrence of anxiety and controlling behaviour. This was resolved quite quickly with the help of our doctors. Currently, we are prepping her for chelation and have just done the pre and post challenge test with showed a good excretion rate. Recently we did another round of the RBC (Red Blood Cell) test which tells us the levels of minerals, this is by far the most accurate test for mineral levels. We also did the kidney and liver panel again as well as viral panel to test for a range of viruses.

As always, for every treatment we have done successfully, there are always several supplements or treatment that were either ineffective or worse, caused regression. However, by only introducing one new supplement at a time and close monitoring, we were able to quickly identify the cause and immediately address it. At times, there were regression due to illness or side-effect from certain treatments, however each and every single time she always recovers the skills and progress made and comes back to the level where she was previously. There are shelves full of half-opened bottles of supplements that we no longer use, though it seems like a waste of money, we would never have known if those supplements or treatments would have worked for us or not. Looking back, we tell ourselves that we tried it. Some treatments have shown amazing results, but as with life, sometimes failure happens. If a treatment failed, we try again and keep going forward. We try to maintain a positive outlook and try to see the funny side of things whenever possible.

Maya is recovered from Autism and no longer requires behavioural therapy or special services. However, we still continue to pursue biomedical treatments to address other lingering health issues. Our challenges for this year will include addressing her heavy metal load especially mercury and will start chelation with DMSA very soon. We will investigate further into viral infections and we continually seek to address her immune dysfunction. Occasionally, she is prone to colds, flus and fevers.

Maya is a happy little girl who is thriving well at school. She has lots of friends and enjoys the same activities as other little girls. She has taught herself to play simple songs on the piano and loves ballet classes. Maya has a great personality and has the same sense of humour as her daddy. They have great fun and adventures together and you can frequently hear them giggling and laughing over some private joke together.

>A Good Night's Sleep

Posted on July 17, 2010 by Admin

I was recently reminded by how good sleep is generally in our home right now. It served to remind me to appreciate and not take for granted the good night’s sleep that we have all enjoyed for the past year or so. For the past 3 months, both the girls have been falling ill constantly. As usual, when children are sick, it also affects their sleep as well as the parents sleep. Having just come back from a quick little holiday with Paul, just him and I alone, we both enjoyed 2 nights of great sleep. Looking back, the sleep fairy has been extremely good to us in the past year. I had forgotten all the sleepless nights we had and how I used to crave even a straight 3 hour stretch to sleep. As a Mum, if your kids don’t sleep, YOU don’t sleep right? Since sleep disorders are a common issue for most ASD kids, I needed to remind myself of the luxury and privilege that I now have, a guaranteed good night’s sleep most nights. Nowadays, if they’re not sick, both girls would be in bed by 7.30pm and would stay asleep until 6.30am. Usually they will fall asleep by themselves without much fuss, but occasionally they would cheekily get out of bed again, so we would have to tuck them into bed again a few times, read countless bedtime stories and sing lullabies. But being the ungrateful parents that we are, Paul and I would moan over the 6.30am wake-up calls of them jumping on our beds, giving us kisses and cheerful “Good mornings !” How times have changed, how easily we forget…….

When we first started intensive Biomed, we worked out our priorities together with the doctor. This determined the first course of action and treatment and addressed our most pressing issues. First and foremost was sleep! Throughout Maya’s entire life, even from the day she was born, she always had sleep issues. A typical newborn would stay asleep for 23 hours a day, whereas Maya would be awake for 12 hours a day. For the first few months of her life, she hardly ever stayed asleep long enough like other kids. She would fall asleep while breastfeeding and I remember having to wake her up so that she could drink her fill. When she was a baby, she hated sleeping in her cot, preferring to sleep in our bed, tucked between the 2 of us. Unfortunately, though she would sleep, Paul and I couldn’t for fear that we would accidentally squash her.

When she was born, we had 4 main issues to deal with. I had difficulty breastfeeding her, getting her to sleep or stay asleep, dealing with constant pooping and her constant crying.This was going to be a pattern for much of her life. Breastfeeding was hard!! She had difficulty latching on, she couldn’t suck properly, the milk flow would be too much for her causing her to gag, she would scream for milk, but when trying to feed, she’d scream as if in pain. I had mastitis twice and was on antibiotics while breastfeeding her. Her feeding was so erratic that it affected my milk flow, there were 2 occasions when my milk supply dried up. I had to painstakingly express milk all day long for up to a week trying to get my milk supply up to the previous level. Even when I expressed milk and fed her by bottle, she needed the slowest flow nipple and could only drink not more than 2oz at a time. If she drank too much or too fast, she would projectile vomit. I remember many many times of cleaning up the car, the bed, the floor and changing her outfit and mine many times a day due to her throwing up. She required small feedings very frequently. I remembered breastfeeding her every hour for the first 3 months. When she was 4 months old, she only needed feeding every 2 hours.

At that time, I knew that the mother’s diet would affect the breastfed baby, thus I was careful of avoiding caffein during and after pregnancy. Also friends and family had reminded me to stay away from foods that caused “angin”. However, in hindsight if I had known to stay off casein and gluten too, things may have been different. Even though at that time Maya was never fed any formula or milk-based products, I didn’t realise there was a lactose, dairy or casein issue involved. A child can still ingest it through the mum’s breast milk. When I was breastfeeding, I was constantly hungry, I craved chocolate milk and yoghurt. There were many varieties of yoghurt in Sydney and I loved the fresh greek yoghurt with mixed summer berries from David Jones, Paul would buy me tubs of it. I also ate freshly baked gourmet breads and pastries everyday, now I know better……..

After 7.5 months of breastfeeding, Maya refused to drink from me and preferred the bottle so we moved her on to formula. I envied those other mums whose kids would drink a huge bottle of milk in one go, then fall asleep for hours. With Yasmin, it was so different. She slept well, she fed well and we only had to change her nappy 6 times a day. Because Maya was my first born, we didn’t know any better. We thought 12 poopy nappies a day was normal. We thought feeding every hour was normal for a 3 month old baby. But what I knew was abnormal was her sleeping only for 20 minutes at one time. However, no one could give us any insight on it.

Since she was 3 weeks old, Maya would scream and scream from 6pm until 10pm every night. This went on for 4 months! We would try to feed her, change her, rock her, swaddling, anything that would calm her down. Usually, swaddling her very tightly and rocking and swaying her hard whilst walking around and around very fast would help. For 4 hours every night, Paul and I would take 1 hour shifts, both of us trying to soothe her. Yet, she would continue to scream bloody murder. Doctors would tell us it was colic and gave us some anti-colic medication which didn’t work. We were exhausted and worried about our child, but we could’t find any answers. Her crying was always high-pitched at the loudest volume, her cries were so blood-chilling that people were afraid to come to our house or invite us anywhere. We finally had an inkling that Maya had sensory issues, whenever we took her out to the shops or for an outing in the day, at night her screams were more frantic and lasted longer. If we kept her at home all day long, with no distractions or visitors, she would have an easier night. She’d still be screaming, but it was only for 4 hours, rather than 6 hours straight. This eventually got better, especially since we finally got a maid when she was 4 months old. For the first time ever, Paul and I managed to sit down to eat together while the maid would rock and soothe Maya. I remember days when I never had a chance to sit down, because Maya needed to be carried and rocked all the time.

When we finally weaned her on to solid food, it was a struggle. She did not like to eat. Mealtimes would take up to 1 hour, just to coax 2 tablespoons of food into her. She continues to be a picky eater up to this day, with a very small appetite compared to other kids. However, when she was 1.5 years old, I moved her on to fresh milk. She loves it so much and could drink up to 1 litre a day, which is a lot for her. And she loves bread, she would happily eat bread and drink milk all day and nothing else. We noticed the addiction, but nontheless we were happy that we could feed her nutritious meals by making pizzas and sandwiches which also contained protein and vegetables. We noticed her love of milk, but we have been taught that fresh milk is good, lots of calcium and nutrients right? She would drink a 6oz bottle, then she would be all dopey and sleepy and goofy. She acted like someone on drugs, all high and woozy. Initially we thought it was funny, until years later we learnt about the opiate effects of casein and gluten.

She would have explosive bowel movements 12 times a day in the first 3 months. We did not know this was abnormal. And once a day, every day, her poop was so explosive that it would burst out of her nappy and cover her entire body. Her little bodysuit would be soiled from the knees up till halfway up her back, sometimes she would be covered in her poop from her neck down to the ankle. We threw out so many outfits because it would get so soiled. She also had nappy rash, again and again. We were still in Sydney at the time and when I showed her poopy nappy and her red sore bottom, our well-respected and experienced Australian paediatrician said fully breast-fed babies are not supposed to have diarrhoea and they are not supposed to have nappy rash. Errr……… “Doc, I don’t care whether they’re SUPPOSED to or not, but you can see for yourself the diarrhoea and the nappy rash. I fully breastfeed her, yet she still has diarrhoea and she has bad nappy rash”. He didn’t have any answer for that, just kept saying that she’s not SUPPOSED to have them. I don’t care what medical books say, she DID have them, so help me out here will ya? Can you explain this doc? Can you help my baby?

From the very first day she was born, Maya didn’t sleep well. Paul spent the 4 nights in hospital with me, sleeping on the floor. The hospital advocated the baby sleeping or rooming in with the mum immediately from birth, in order to facilitate bonding. There were no nurseries where babies are placed, all babies roomed in with the mums unless they were in ICU or if the mum had complications. The nurses would always be on hand to help, but Paul was and still is an amazingly hands-on dad. Because I couldn’t get up from bed for a few days after the Caesarean birth, Paul took charge of changing her nappy, rocking her and burping her. He even gave her her first bath, even for the next few weeks after because I was afraid to bathe her myself. In hospital, Paul would hand Maya to me whenever she needed to be fed. She would not sleep in her bassinet, preferring to sleep cuddled up next to her Daddy even from her very first day. She loved being held by Paul, he would sleep on a mattress on the hospital floor in my private room. She would cuddle up to him, her little face tucked against his chest. Only then, she would sleep peacefully. I remember nights in the hospital when she would scream and scream and I was not able to get up from my bed. Paul would rock her all night long, walking down the dark hospital corridors while trying to soothe her. Even while we were all holed up in hospital, Paul still had work to attend to and would try to catch up on his emails. He would sit on the floor in front of his laptop, Maya cuddled up in his arms whilst typing out an email.

As a young baby, Maya would fall asleep for 20 m
inutes and stay awake for 1 hour, then sleep for another 20 minutes and so on. By the time she was 2 months old, at night she eventually managed to sleep for 2 hours straight. Then wake up again for another hour to drink milk, a nappy change, then another half hour of rocking her back to sleep and she would sleep again for 2 hours. Usually, she would wake up cranky and crying, even after a somewhat long sleep. This was how life was like in the first years of her life. However, when she was 1 years old, she finally managed to fall asleep by herself without much difficulty and would sleep for 12 hours straight at night. We would limit her daytime naps to only once a day, and then only for 1 hour. We wouldn’t let her nap too late in the day, otherwise she would be up all night. It was mean, but that was the only way we could cope. However, even though she slept well at night, during the day time was very tough. We had to deal with her tempers, meltdowns and mood swings. It wasn’t quite as bad as after she regressed into Autism, but it was taxing enough for us.

But throughout all the difficulties and challenges, Maya developed and achieved all the milestones at age-appropriate levels. Her growth chart and well-baby visits recorded normal development. She received all her vaccinations on time and we combined both Australian and Malaysian vaccination schedules. Therefor Maya received more vaccinations than the average Australian or Malaysian child. Her last vaccination was for Meningococcal C. She was 1.5 years old then, about 4 months after her MMR and Varicella vaccination. We were living in Sydney then, the vaccination was give 1 week after Yasmin was born. Before that, there were many videos and photos of how happy and interactive Maya was. She didn’t really talk spontaneously, but she would label things on the posters for us, when asked where’s Mummy, she would point to me. When asked who that was, she would happily tell us their name. She had a big vocabulary and could count to 20, she knew all her alphabets. Though she never did call me Mummy ever, she knew where I was and would always want my attention and be with me. She had a sparkle in her eyes, she was full of fun and played well with other kids.

Looking back, we realised she started to plateau developmentally and she slowly regressed. She talked less and less, her tantrums and aggression were worse. She retreated more and more and preferred to be alone and her sleep deteriorated. Maya constantly would wake up in the middle of the night and stay awake for 2-3 hours, singing, laughing or talking to herself. Or it would take her a long time to fall asleep. She also kept getting constipated, medical records showed many visits to the doctor with a prescription for more laxatives. And her behaviour and condition deteriorated until she was finally diagnosed with Autism.

Unfortunately, only years later with the hindsight I have now, I now understand why Maya was such a difficult baby. And why she eventually regressed and became the 1 in 100 to get Autism.

Obviously, when we started biomedical, sleep was our first priority, years of sleepless nights has taken it’s toll on us. So getting her sleep sorted out was by far the most important thing for us, rather than the Autism behaviours. Dealing with her behaviors was extremely challenging enough, but doing it day in and day out on very little sleep was just too much for us. The GFCF diet helped by reducing some of her food cravings. By eliminating casein and gluten, this also caused a reduction in gut issues. A lot of sleep issues are directly related to GI disorders. Since we took out casein and gluten, and later introduced digestive enzymes, she could process her food better. Thus reducing her reflux and colic, which are frequent culprits when dealing with sleep issues in kids. We also used melatonin for the first few months to help regulate her sleep patterns. However, melatonin alone will not resolve the underlying sleep disorder. Once we started intensive biomedical treatments, we eliminated all the IgG reactive foods including soy and eggs, based on her IgG Food Intolerance Test results. We replenished her with magnesium, which has a calming effect and gave her high doses of casein-free multi-flora probiotics. Magnesium and probiotics also relieved her of constipation, another culprit to consider if your child has sleep issues. However, only when we started doing several rounds of anti-fungals, then her sleep issues were totally resolved. Fungal or yeast overgrowth is a common cause for night awakenings followed by laughing and giggling. Yasmin however had sleep issues whenever she had bacterial overgrowth, this would also include bloated tummy, crankiness and smelly abnormal stools.

Therefor, whenever my children have sleep issues, I always go through my checklist;

1. Diet – were there any casein, gluten or other infractions such as MSG, preservatives, colorings, high salicylates, too much sugar etc

2. Is she constipated? If yes, then check the possible causes eg if she’s getting enough magnesium, diet infraction or yeast overgrowth. With Maya, once we resolved her constipation and yeast overgrowth, her sleep improved 100%

3. Is it due to yeast-overgrowth? Possible clues for my girls include laughing middle of the night, during the day there is giddy, silly behavior, standing upside down, lots of climbing and jumping off furniture, eating too much sugar or yeast feeding foods, scratching bottom, biting toes, rash, itchiness, constipation

4. Melatonin – would a few nights on melatonin resolve the issue? If no, then check the other causes. Also, hyper kids are not able to regulate serotonin levels amongst other things, serotonin is the precursor of melatonin. At one point, it took a long time for Maya to fall asleep, usually we would need to rock her for 1-1.5 hours every night! During those moment, melatonin helped her to fall asleep faster and easier.

5. Magnesium deficiency – increasing magnesium may be calming

6. Folinic Acid – for some kids on MB12, it may cause hyperness. Tempering it with folinic acid may have a calming effect. Some may need certain amino acids if they are deficient.

7. Is it GI problems such as bacterial infection? Bloated tummy, low appetite, tantrums and diarhhia are usually followed by sleepless night in my home.

8. Are they ill? Perhaps they have a virus, sore throat or fever or colds and flus, these would affect sleep. Especially if their nose and sinuses are congested and it affects their breathing at night.

9. Is there enough calming treatments? Warm epsom salt baths at the end of the day is usually calming for our kids, gentle massages by mummy also helps to calm them down.

10. Sleeping arrangements and routine: is the room temperature too hot or too cold, is my child shivering or sweaty, is the room too dark? Maybe your child may be comforted if there’s a nightlight. For my girls, I installed blackout curtains so that the morning sun would not shine so brightly waking them up too early. Do they share a room, is their sibling waking them up? If they share a room with the parents, is the child being awakened by your husband’s loud snoring? Most kids respond well to a set routine, therefor try to establish a good night time routine .

11. Sleep pattern & habits – do they still have an afternoon nap, is the nap too long or too late. Is it possible to either limit the time they nap or take away nap time completely. Remember, anyone child or adult, if we have a nap in the afternoon, chances are we will be well rested and won’t feel sleepy until midnight. If we are only able to sleep a total of say 10 hours a day, then if we take a 3 hour nap in the afternoon waking up at 5pm, chances are we won’t go back to bed until 12 midnight, and will wake up fresh and rested at 7am. Simple math right?

The challenge here is when the child is so exhausted in the day time after several hours of intensive 1 on 1 therapy, they really really need to nap. It seems cruel to take it away from them. However, in the end the mum ends up utterly exhausted too because they have to deal with a wide-awake active child until midnight. Therefor, we have 2 choices. Either follow the child’s routine ie. accept the nap time and hopefully you get a chance to nap and rest when they do, accept the fact that you will only be able to go to bed at midnight every night. Or the 2nd choice is to try to change your child’s sleep pattern, this is quite difficult according to most parents. However, due to desperation, this is what I did. We started home based ABA when she was 2y9m, she still needed a 2 hour nap everyday at 1pm. So after the morning ABA session, she’d have a quick lunch and have a nap. However, sometimes she wanted to sleep longer. Many times we had to wake her up because the therapist had arrived. However, if woken up prematurely she would be extremely cranky throughout the day, even during therapy times. Also, because of this, we couldn’t get the maximum amount of hours of ABA that Maya required.

Therefor, I tried all means possible to keep her awake during the daytime with tv, toys, snacks, playing games, ANYTHING that would keep her entertained and not want to go to sleep. And usually by 5pm, she would be dead on her feet and try as we might, she would fall asleep for 5 hours straight and wake up at 10pm! Of course, whenever this happened, she wouldn’t go back to sleep till 3am. After a few weeks of this extremely exhausting pattern, we eventually managed to keep her awake till 6pm, then 7pm. Simultaneously, I would give her melatonin WHILE she was sleeping, in the hopes that it will keep her asleep for a few more hours. When she was overtired, it also took a long time to calm her down enough to fall asleep. It took a couple of months of even more worse broken sleep though, but eventually we got there. By the time she was 3y1m, she could stay up the whole day even with a full day of ABA with no nap. She
would be cranky, overtired and irritable in the late afternoon and always falling asleep, but we persevered and cruelly kept waking her up and keeping her awake until she’d fall asleep exhausted at 7pm. After that, I’d sneak in a small bottle of milk with 2mg of melatonin around 11pm and she would only wake up at 7am the next morning.

However, as she grew older and her body grew healthier and stronger, she was no longer as exhausted by 7pm. She no longer needs melatonin after the first 3 months of us regulating her sleep cycle. Though it seemed cruel at first, eventually Maya got used to the routine and was well rested and had enough energy to get through all her therapies and the demands of the day. Best of all, Paul and I get to have the evening together. We get to have some quiet relaxing time together and can look forward to a good night’s sleep.

For my girls, after we have successfully taken away their nap times and they are able to sleep from 7pm – 7am or so, we try to have this routine for the past year. After dinner, they have a warm epsom salt bath together, often with me included, we brush our teeth together and we all choose our favourite pyjamas or nightie. Then when I can, a nice massage by mum with perhaps glutathione lotion, MSM cream or magnesium cream. If not, a simple lavender based oil or lotion is calming too. Then the girls get into bed, the air condition at a nice cool temperature, the air purifier switched on, curtains shut tight and a soft nightlight on while Daddy reads a bedtime story. Then, they have a nice bottle of rice milk with melatonin perhaps. I tuck them into bed and I kiss and hug them every night ever since they were newborns and I always tell them how much I love them, how proud I am of them, I say thank you to them for a lovely day, and that we’ll have another happy day tomorrow. I let them know how happy they make me feel and that I hope I made them happy too. I tell them how brave and clever they are. I tell each girl private words of love and affection. I tell them to have sweet dreams and that I’ll see them in my dreams. Every night whenever I tuck them into bed, I never fail to tell them this. After years and years of whispering my love to them in their ears, eventually Maya and Yasmin started telling me good night and that they love me too. Good night and sleep tight everyone………

>Survivor, Not Victim

Posted on July 10, 2010 by Admin

A parent had recently asked me if I was scared, she had written to me with such stark honesty about her fears and desperation. She wrote of her life, her child and how twisted her world had become. I can still remember living in a twisted world and I’m sure I have scared off a lot of friends and alienated many people around me with the intensity of my pain. Though I got a lot of sage advice, I was deaf to it because of the roaring of the pain in my soul.

To most people, listening to an Autism Mum can be quite challenging. It is hard for most people to truly understand what life is like with a child with Autism, most think that it’s like the movie Rainman or what is commonly yet wrongly portrayed in TV as what Autism is. For a lot of us Autism Mums, we learn the hard way not to talk about it with most people, otherwise you end up alienating yourself and lose friends. How often can a friend or even family members listen to you about the stimming, the spinning, the lack of speech, the poop smearing, the obsession to lick every single thing or the bad nights that the mum has had? The ASD symptoms can be quite bewildering to non-ASD parents, most of them don’t understand why we obsess over the seemingly small things. So what’s the big deal about lining up toys, waking up singing in the middle of the night, climbing on the television, biting the teacher, spinning in circles, lack of cooperation or speech that is slow to come? What’s the big deal about a child’s constant drooling, lack of eye contact, repeatedly tapping on the walls or standing upside down? No one wants to hear about the insane screaming and tantrums that used to go on in my home (except maybe you guys who are reading this!) When I talk about the meltdowns and anxiety, the picky eating and the non-compliance, usually I get blank looks or condescending remarks on better parenting.

My friend had poured out her soul into her email and wondered why I hadn’t replied to her. I finally wrote back and apologised, explaining that both my girls were ill and so was I, thus the late reply. I also wrote “You asked me before if you scared me; I have been in situations a lot scarier. I don’t scare easily.”

As a parent with a child with Autism, you would understand what those scary moments are. I have been scared when my daughter would bang her head so hard against the floor that I thought her skull would break. I remember the fear when I heard Maya laughing insanely in the dark at 3 o’clock in the morning. I have let fear stop me from getting treatment for my child. I have been afraid of being left alone with her because I was not able to control her. I was scared of taking her out in public because she would scream so loudly as if she was being tortured that everyone would stare. After what my family and I have been through, an emotional email from a distraught mum doesn’t scare me. I have seen fear in my childrens’ eyes; that’s when I knew that just because Mummy is scared, it doesn’t mean that Mummy doesn’t have the courage to keep fighting for her baby.

I am guilty of holding my child back, for fear of her failing. But if I never allow Maya to be challenged, how will she ever learn and grow? The future was full of unknown fears, because Autism has such a bleak prognosis, I didn’t know how I should plan our future. Leaving her in a room with a therapist was difficult, so was letting her go to school for the first time.

Doing the first blood draw was so traumatizing for Maya and us that it actually stopped us from pursuing biomedical treatments further. I was scared that doing biomed would require us to do more blood tests, the memory of that first blood draw still brings shivers through Paul and I. It took 6 people to hold Maya down, drop after drop of blood was squeezed out of her arm. Vials and vials of precious blood, to the sound of Maya’s horrific screaming. I swore to never let her go through that again.

Ironically, that horrific blood draw was not even for Biomed, it was actually for mainstream medical screening tests. The worst thing was, all those tests came back negative or inconclusive. The doctor didn’t find anything “wrong”, there were no treatments to follow up with except some vague remarks about giving cod liver oil. All that trauma for nothing, it imbedded a deep mistrust in the medical profession in me for a long time.

I kept making excuses and delaying to see a DAN doctor for several months. We’ll see the DAN doctor when…… her ABA program is well under way, when she gets over this cold, when she’s healthy, when she is more compliant, when she can listen to us and not meltdown when we travel with her etc. Then when both girls were hospitalized for Rotavirus, it suddenly hit me that if I were to wait to travel to see a Biomed doctor only when Maya was healthier or when she was more manageable, it will never happen. She was having colds, flu, fever, coughs and tummy aches constantly. She was still non-compliant, there were still epic tantrums and meltdowns whenever she wasn’t doing ABA. There were very few moments when it was convenient for us to take time off to travel to the doctor. There were always important ABA programs that we couldn’t take time off from, there will always be chores and meetings. There was never a perfect time to travel, there were always other commitments that took precedent. It was a lightbulb moment for me, I really understood then that my child was sick. She will not get healthier nor will her behaviour improve until I get her treated. I finally understood that taking care of her underlying medical health should be our foremost priority.

I finally got up my courage to take that step and make an appointment with a real DAN doctor, someone who was listed in the ARI website. 6 months of wasted time, only doing ABA and not doing anything about her medical health. I finally realised that I was scared of the blood draw, that this fear was holding my daughter back from getting the medical treatment she needs. That fear held us back for so long, that when we finally met our first and then our 2nd Biomed doctor, I felt so foolish. Because the fear that I was so afraid of was unwarranted. There were no blood draws involved! Only a prick on the finger for a blood spot.

Months later, we were required to do blood draws for certain tests as we were doing more and more complex treatments. However, we took it all in stride. Sure, it was difficult and painful to go through. But we realise that Maya got over it much quicker than we did, it was foolish of us to hang on to that fear when the pain has already worn off long ago. We just did another round of blood tests a few days ago. Maya cried, Paul went a little pale and I got choked up when I saw Maya’s blood spurting out of her vein. But we got over it. We know that in order to ensure that we do all these treatments as safely as possible, we do need to go through a blood test once in a while. A small amount of pain now, for a lifetime of happiness right?

This morning, I was sitting in the lobby of a dance school, waiting while Maya is having her ballet lesson. She has been pleading with us for months to go to ballet class, but I always held back because I felt that she was not ready for it. After some time, we finally took Maya in for a class. As always,
whenever we felt that we were pushing her over her limit or demanding too much from her, she always exceeded our expectations. Again and again, she has shown us how high she can soar. I am in awe of this beautiful daughter of mine, her heart is so big, her strength and courage puts me to shame. And yet, I still tend to hold her back for fear of failure. Whether it’s hers or mine, I’m not sure.

She did so amazingly well, in a class of a dozen little girls in identical pink tutus, you would not see her any differently from the other ballerinas. Except for her huge smile and graceful arabesques. She has had several classes and her enthusiasm and love for dancing is apparent. She pays attention and obeys everything the dance teacher says, points her toes and follows all the moves. She is dancing in a group with other tiny adorable ballerinas, stretching on the barre bars and standing at first position like a prima ballerina. I was surrounded by other mums who, though proud of their little girls, seem to take it for granted that their girls are fine. I’m so freaking proud of Maya that I had to stop grinning like a fool in the lobby, my heart is so full of pride for her I feel it would burst. They are chatting about family vacations and private schools, while I still can’t let go of the grip of Autism just yet.

In the first few months after Maya’s diagnosis, the fears and the tendency to hold Maya back was turning me into an Autism Victim. When I discovered that about myself, I swore not to be a victim, that my daughter and my family will not be a victim to Autism. Instead, together we took the journey to be Autism Survivors. Sometimes we need to go through a war in order to survive. Though the war on Autism is over in our home, we still feel like we’re living in a war-torn zone. It will take time to rebuild this family, though we are well on our way. It will take even longer to recover financially, though our initial investment has multiplied ten-fold in other ways. We have kicked the enemy’s ass and regained our country. We are no longer Autism Victims, we are now Autism Survivors.

>Missed Apologies and Forgotten Thank Yous

Posted on June 24, 2010 by Admin

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It has been a long time since I have written, my apologies to my friends whose support and encouragement are deeply appreciated. There are many thoughts that are just waiting to be published, but time and circumstances have not been kind lately.

I do miss the creative process of writing, innocuous as it may be. I have a long way to go before I can write well enough for my work to be published. Somehow, putting my thoughts and experience into words have a therapeutic effect on me. A lot of my writings here are emotionally draining, most of them delves into memories and emotions that sometimes I prefer suppressed. It takes a lot out of me to expose the sadness and grief that my family has gone through. Even writing about the happy memories are heart wrenching as well. Yet I keep asking myself why do I do it? Even my husband asks me time and again, why do I write this blog?

When I first started on this journey with Autism, it was painful to read about therapies and treatments that were simply not available in Malaysia. It seemed that everything that I wanted to do involved moving my family halfway across the world, with money that I don’t have. I wanted to know how to do these treatments here in Kuala Lumpur, how do I get these services and products? There should be a way to do it from here and I remember wasting a lot of precious time. Precious time that I hope to save for another child who needs treatment now. Very quickly, I learnt not to dwell on the things that I couldn’t do. Otherwise, the anger and resentment would eat me up inside, leaving me a soulless shell. It is a very self-destructive force and I didn’t want to end up a victim. Instead, I redirected and channelled my time and energy into more productive means.

Just because I couldn’t have Dr Bryan Jepson or Dr Kenneth Bock treat my daughter, I wasn’t going to waste my time crying about it. If I couldn’t get Amazon to ship a book I really wanted to Malaysia, I would get my local bookstore to order it in for me. If a supplement company wouldn’t deliver to Malaysia, I would have it shipped to a Hub service and get it rerouted to Malaysia. Even if all my wishes don’t come true, at least I tried. At least, I can honestly look into my daughter’s eyes and tell her that Mummy did her best. I didn’t hold back and reserve my energy and resources for a rainy day, my rainy day is now! It was a risk I had to take.

I didn’t mourn the fact that I couldn’t get the best and most experienced ABA therapists in Malaysia, instead I worked towards getting reliable and enthusiastic therapists who were willing to learn and work hard. No point getting the `best’ therapists if they don’t bond with your child, no point getting the `best’ therapists if they couldn’t commit to you. Absolutely no point getting a consult with a world-class doctor if it meant travelling 23 hours on an expensive flight and it’s going to drain away all your savings just on one consult. Leaving you with no money to pay for subsequent consults, supplements or tests. No point holding out for that precious consult with that famous doctor if it meant you would have to wait 9 months for an appointment, don’t wait! Do it now, see a doctor now. Who knows, that doctor who you or others label as being second-best may well be the best doctor for your child.

The best doctors and therapists are the ones who care about your child, the ones who are committed to helping you. If they do not have 10 years experience in biomed or ABA, so what? As long as they are willing to learn more along the way, work hard for your child and take the time to listen to you. These are all the people who will be with you along the journey, so make sure these are people you can trust. The so-called “best” may not be the best for you child.

If not for the advice, help and support of some amazing parents, friends, family, therapists, consultants and doctors, my daughter would never have come this far. Did you know that I have heard criticisms about every one of these people? No matter which doctor, therapist or consultant I had, there were always someone who had criticism about them? Everything was “unproven”, second-rate, not the best, it’s quackery, it wasn’t double-blind placebo studied etc. If I let my decisions be ruled by other people’s opinions, I wouldn’t have done anything at all. If I waited until mainstream medicine had conducted “proven” double-blind placebo studies on every treatment, Maya would have become a severely Autistic adult by then. Every single person, professional, product, therapy or treatment that I was doing have come under harsh criticisms. But, I learnt to put faith in my judgement. And I learnt that there are some people who are so negative, that being around them would drag me down into their world of negativity. I acknowledged that some people have been deeply hurt and disappointed with the world, and only seek to give me advise. But I realised that I would have to take some risks. I will never find approval from everyone, that there is no such thing as a 100% guarantee label on any Autism treatment or therapy. No such thing as the perfect therapy or treatment. These were times when I had to take a leap of faith.

I remember the unsung heroes too, the quiet ones who never get the acknowledgement, but without them, we wouldn’t be living this privileged life now. I give thanks to the Fedex guy who fights so hard on our behalf with Customs to get our supplements into this country. I am thankful for the kindness and patience of nurses and doctors’ receptionists who put up with my demands. My appreciation for the cook at Maya’s ABA school who kindly prepares GFCF meals for her. I love the grocers and shopkeepers who stock up on my favourite rice milk, GFCF cookies and spaghetti. Not only that, they take the time to reserve them in our name and call me to give me first dibs. How lovely is that?

I thank amazing friends who nearly broke their backs to carry 20kg bags of Epsom Salts and distribute it to others. Selfless friends who smuggle supplements into the country for me at their own personal risk. I thank the restaurant waiters who have served us for years with patience and graciousness, even though every time we bring our children, they create such noise and mayhem. We leave trails of destruction at every restaurant we go with spilt drinks, scattered crumbs, snotty tears and screams. Yet they still made us feel welcomed even though we usually leave in such a rush that we never remember to tip them. I am grateful to the florists who tolerate it every time my kids go past their shops, the girls would excitedly touch their beautiful floral creations. Overtime, the girls have learnt not to touch them, but occasionally they would forget. Even when their excited screams would drive away the other customers. Occasionally, I would buy a bouquet out of guilt but not enough to make up for the mayhem. Yet these guys have always been kind to my girls. I give out silent apologies to countless others who over the years I have been less than kind or brusque, usually arising from the stress and pressures of dealing with the girls. It doesn’t excuse any rudeness on my part, yet I have never intentionally set out to be unkind. I hope God will hear my apologies on their behalf.

I love each and every therapists who have taught Maya, their kindness, loyalty and commitment has more than made up for their so-called lack of qualifications and experience. In this, I have been blessed to have found the best support network for Maya. They may not live up to the expectations of what the best may be to some, but in this instance, they were the best for my girl.

I thank each and everyone who has written a comment on this blog, those who have read my writings and urge me to keep going. I would love to reply back to you, however if you didn’t w
rite your email address in the comment, sometimes I am not able to reply to you. Sorry if I didn’t write back, not that I didn’t care enough. Just that I didn’t know who you are, my friend…..

This blog is my small part in paying it forward. I remember how scared and lonely it was when we first dealt with Maya’s diagnosis. I was frustrated by the lack of Autism information that was specific to Malaysia. Most of the information regarding Autism treatments are USA-based. I remember writing to American-based biomed forums for advice, most of the time the replies though in theory were extremely helpful and well-meaning, they usually left me feeling even more dejected. All these parents would reply about supplements and treatments that just were not available here. I wished there was someone else who knew about where to get them, is it available etc.

Not that I ever expected to be spoon-fed, yet I felt that I kept wasting precious time working and digging towards something that turned out to be a dead-end. To me, this is what Autism is like, you feel like you’re trapped in an avalanche. Every day you are trapped underground, you’re a little further away from being rescued. There’s less energy, your food and water are running out. You’re surrounded by dirt, filth and excrement. The air feels stale and thin, you can’t seem to breathe deeply. After sometime, you face the fact that the rescue team can’t hear your cries. This is the point where you decide whether you give up and cry and stay trapped underground. Or do you dig a tunnel with your bare hands and find a way out. Without a spade, torchlight or water. Praying that you are digging in the right direction towards the surface.

If there was only some way that I could help even just one family find their way out a little bit faster, a little bit easier. I want to play my part in helping an innocent child out into the fresh air a little bit faster. I may not be able to excavate you out, but I hope you can hear my voice as I call out to you and you can dig towards my voice, towards the surface.

It has been 2 years since Maya was diagnosed, since then resources and support in Malaysia has increased a lot. I am proud to have played a part in this, small as it may be. Paying it forward…..in the hopes that you too, will pay it forward when a friend comes to you in need. I was lucky to have heard some powerful voices, who called out to me and cheered me on. Without their voice, my family would still be buried. Because of you, I’m joining the chorus of shouting. Autism is Treatable!

>Autism Biomedical Events in May 2010

Posted on May 6, 2010 by Admin

>There are 2 exciting Autism Biomedical events in Asia this month.

The World Autism Congress 2010 is being held in Hong Kong 15 -16 May 2010. Please visit www.worldautismcongress.com for more information. World-renowned biomedical experts such as Dr James Neubrander, Dr Andrew Wakefield, Dr Kenneth Bock, Dr J McCandless and many more will be presenting at this 2 day world-class symposium.

Conference on Autism: A Holistic Approach to Treating Autism is being held on 23 May 2010 in Singapore. Dr Kenneth Bock will be presenting as well as Dr James Partington. Please visit www.autismrec.net for more information.

Don’t miss this opportunity, it’s not too late to register.

>DAN Doctors in Malaysia

Posted on May 6, 2010 by Admin

Please refer to https://spectrummum.wordpress.com/2011/02/21/more-biomed-doctors-in-malaysia/ for the latest information regarding biomedical doctors in Malaysia.

Good news for Malaysian parents and children, there are now 2 biomed doctors in Kuala Lumpur!

Dr Ng of Gleneagles Hospital, KL is a Pediatric Neurologist. She attended the Defeat Autism Now! Clinician’s Training Level 1 in February 2010 (Phone 03-42571300)

Dr Eddie Chan of Dr Chan Specialist Clinic is a Pediatrician practicing in Puchong, Selangor. He attended the Defeat Autism Now! Clinician’s Training Level 1 in April 2010 (Phone 03-80623925)

Please consult with a biomed doctor in managing your child’s biomedical treatment. Autism is Treatable, Recovery is Possible!

>DAN Conference April 2010, Baltimore

Posted on April 17, 2010 by Admin

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I came back from my 2nd DAN Conference in Baltimore full of hope, resolution and strength. It is a long way to travel ‘just’ to learn about how I can treat my girls, the cost alone could have paid for a few months worth of consults and supplements. A couple of months before the conference, I had read the list of speakers and topics they would cover and I found that 90% of it were materials that I had a special interest in. After doing biomedical treatments for Maya for 1 year, she has improved tremendously and we know that her Autism days are far behind. However, I am now trying to resolve her residual health issues.

I was also motivated by the need to address Yasmin’s issues. After doing biomedical treatments for 9 months, we have yet to see real progress in Yasmin. Though she is no longer in a fast-track downward spiral into Autism as before, we are dissatisfied by the lack of breakthroughs. We have consulted several mainstream and biomed doctors for Yasmin, yet no one has been able to address the root cause.

Paul and I worked out our budget trying to squeeze in that extra bit to finance my trip to the US. Again, I went alone as we could not afford for both of us to go. I planned it as carefully as I could, not wanting to leave my girls longer than necessary. No extra day’s grace to get over the jet lag or tiredness from the journey, no extra days for sightseeing or shopping. I was there and back in 6 1/2 days. Looking back, I don’t know how I did it, 27 hours trip to Baltimore and checked into the hotel an hour before the sessions started, and went straight into a 2 hour workshop on Thursday evening. I flew back on Sunday evening immediately after the last lecture, it took me 29 hours to get home. I am blessed to have such a supportive husband, I left my girls in his care and never had to worry if they were ok because I knew that they have a great daddy.

There were several workshops that evening, last year I chose the Family to Family Workshop by Lisa Ackerman, the founder of TACA. So this year, I chose Introduction To Biomedical by Dr Kyle Van Dyke. I felt that I needed to get back to the basics as I felt that there were some gaps in our treatment plans. A frequent speaker at many Autism and biomed conferences, Dr Van Dyke treats children with Autism as well as their siblings. He mentored and worked with Dr Elizabeth Mumper and now runs his own practice in Wisconsin. He became involved with DAN when his son was diagnosed with Autism in 2004.

From then on, the lectures and sessions just got harder and harder, it was the start of 3.5 days of the most intense biomedical and biochemistry lessons I have ever had to do. Friday, Saturday and Sunday was packed with lectures by the heroes of biomed; Dr Sidney Baker, Dr Jeff Bradstreet, Dr Kenneth Bock, Dr Anju Usman, Dr Bryan Jepson, Dr Dan Rossignol and many many more. Everywhere I turned, there was another familiar and famous name next to me. I also had a chance to catch up with Dr Mark Westaway, he is now doing full-time research with Dr Martha Herbert in Harvard for the prestigious TRANSCEND project. I made many new friends, mothers just like me and caught up with old friends too. I had a chance to talk to others who are part of the biomed community, namely compounding pharmacists, biochemists and speciality supplement manufacturers. I met many great mothers from TACA, they are generous with their time and advice. These women are strong and inspiring, no wonder their children are recovered.

Understanding biomed and medical treatments are especially difficult for me as I have never had a head for the sciences. During my high school years, I scored well enough in my SRP to be placed into the Science Stream. But halfway during Form 4, I kept failing Chemistry, Physics and Biology and my mother decided to move me to the Arts Stream. There, I thrived and did well in my studies. So, if I continously failed high school science, how was I going to learn all this? But the desire and motivation to learn this time was far far stronger than 20 years ago. The health of my 2 girls were at stake as well as a great deal of money invested. I had to make sure that I did my best and come back with at least something to show for it.

I came back not only armed with more knowledge on treatments, but also empowerment and strength. It is rare for an Autism Mum be part of the crowd, we are usually the ones hovering on the edge of society and social function because our kids behave atrociously in public. Our choices on how to treat our kids are often questioned, we face censure and judgmental opinions often as others feel that they know what is best for our kids. We are known as Autism Moms, a label I both dislike but am proud of. Here at the conference, WE are part of the norm, everyone I sit next to understands what I’ve been through, everyone I speak to doctors and parents alike do not treat me like an overanxious mother. Even amongst Autism Mums in Malaysia, I often felt isolated because I chose to do biomedical treatments for my child. However, now I’m blessed to have made many close friends as more and more parents are doing biomedical intervention in Malaysia. They are in the unique position of not only being an Autism Mum, but they too are Autism Biomed Mums.

They understand the excitement I felt at acquiring a painting by Mark Rimland, they understand it when I say that I got to bring a piece of Dr Bernard Rimland into my home. They shared in my happiness when I managed to get consults with Dr Kyle Van Dyke. They shared in the excitement when I spoke of talking to Dr Jeff Bradstreet, when Dr Sidney Baker took the time to answer my questions, of bumping into Dr Kenneth Bock every day at the conference. They understood of how I jumped for joy when my shipment of MB12 and DMSA arrived at my hotel. And they understand why I would go to great lengths to keep seeking answers for my children.

Our mother’s instincts is a gift that all mothers have, so use it wisely. Keep on going, don’t stop looking for answers for our kids, travel across oceans if need be. Act with bravery, courage and caution my friends.

>KL Biomed is Live & Networking

Posted on March 11, 2010 by Admin

>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

Posted on March 1, 2010 by Admin

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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?

Posted on March 1, 2010 by Admin

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.

>Bathrooms, Big School and Uniforms….

Posted on February 1, 2010 by Admin

>
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

Posted on January 22, 2010 by Admin

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:

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

Posted on January 20, 2010 by Admin

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.

Spectrum Mum in Malaysia

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

Category Archives: autism

>My Top 10 Favourites……

>More Recovery Stories

>Treatment Protocol Plus A Dose of Fun

>A Good Night's Sleep

>Survivor, Not Victim

>Missed Apologies and Forgotten Thank Yous

>Autism Biomedical Events in May 2010

>DAN Doctors in Malaysia

>DAN Conference April 2010, Baltimore

>KL Biomed is Live & Networking

>Favorite Subjects at School

>Which Probiotic?

>Bathrooms, Big School and Uniforms….

>Biomedical Treatments For Autism Spectrum Disorder

>Bargain Hunters

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