>Sending Test Kits, Poop Smugglers No More!


Growing our own vegetables

Doing biomedical tests are important as well as expensive. There are many ways we can economise. Many of us now face the task of sending test kits of urine and stool samples for our children’s treatment. We either send the test kits to the labs directly or to our overseas doctor. Whenever possible, always send the test samples directly to the testing speciality lab,rather than to the middle-men lab as is the case in certain Asian countries. Thus avoiding the price mark-up and the samples are fresh and gets to the appropriate labs faster. Otherwise you end up sending the urine and stool to for example, to the Singapore clinic or Jakarta lab, which takes 2 days, then the clinic or local lab then sends it out to the appropriate labs in the USA or Europe which takes another 3-5 days depending on weekends. Which means the turnaround time for your child’s precious urine or stool takes roughly 1 week to get there. Remember, there’s a small period of time which the samples are still viable, otherwise the samples would have deteriorated or rejected by the lab.

So, either you get the full complete test kit from your doctor which includes the collection vials, requisition form and customs declaration forms. Or you email your doctor to request from the lab eg. Doctor’s Data Inc to courier the test kit directly to you, this is easily done. My doctor has done this for me several times, it saves me a trip to Singapore just to pick up a test kit. DDI will email you for confirmation as well as request for your credit card details to charge you for the delivery cost one way. This costs you US$20 per test kit.

If your doctor is reluctant to do this for you, please find a sympathetic local doctor to help you order the test kit, otherwise contact DDI or their local agent (there is one in Singapore for the region) directly to ask for their assistance, they may be able to find a way to help you. Once you receive the kit, read the instructions on how to collect the samples and shipping information carefully. When in doubt, contact your doctor or the lab directly for further clarification. Then you fill in the test sample, fill in the form and courier it back to DDI.

However, in the case of the French lab Phillipe Auguste Laboratoire which is highly respected for their urine prophyrin test as well as their Organic Acid Test (OAT), you can contact them directly on their website to request for them to send you their test kit directly to you. They do not require a doctor to order them, a parent can order it themself. After you fill in the test kit, fill in the appropriate requisition form the details needed such as name of your managing physician/doctor and your credit card details. This is the same for Great Plains Lab, you can contact them directly and order the test kits yourself. They generally require a physician’s approval for US patients, however contact them for assistance for international patients.

For Philippe Auguste Laboratoire, please send the package by registered post only, not courier or poslaju. This is due to French customs restrictions. By post can take 1-2 weeks to arrive, however you can always check by email with the lab directly if they have received your shipment. Always make a copy of your requisition form so that you can provide the order or test kit number etc. Another way to check if they have received it is to check your credit card statement, the lab will only charge your credit card once they have received and are processing your test kit.

When filling in any test requisition form, please include your email address so that you too will get a copy of the test result, otherwise they will send it only to your doctor. And if your doctor is super busy, he or she may not have time to email the results to you. The turnaround time for the results to come back once receiving the test kit will vary. Depending on certain labs or tests, it’s usually 2-5 working days, it may even take up to 2 weeks. Especially when testing for clostridia or candida, it might take more time to culture. Even over the Christmas holidays, I found that they processed my test results quickly and efficiently. However, keep in touch with the lab to find out if your test results are ready, don’t wait too long idly by. I know parents who had to wait 2-3 months for their test results, when they finally received it from their doctor, they found out on the report date that the test was completed months back. So, be proactive and contact the lab yourself. We pay a lot of money for these tests and the consults, so I expect to get my test results on time. Time doesn’t wait for anyone, so even if you contact the doctor and they say that the test report hasn’t come back yet, if you think it’s an unreasonable amount of time, please contact the lab yourself. Take charge, don’t let others slow you and your child’s treatment down unnecessarily.

Hard at work washing windows

For test samples sent to DDI, it requires ice packs, I would suggest including extra ice packs, more than just the small one they provide in the test kit. They cater to mostly US patients, which only takes 1 day delivery, plus their weather is quite cool compared to us in South East Asia. Thus I always include 2-3 large ice packs whenever sending to DDI. For samples to be sent to the French lab, they do not require ice packs at all.

For urine and stool samples to be sent to the USA, please use Fedex. Many Malaysian parents have discovered that Fedex are the best choice. They are used to sending biological non-hazardous materials ie. Urine and stool samples to medical labs overseas. Please contact Fedex directly www.fedex.com/my/  for Malaysian families to request for pick-up as well as delivery slips and packaging materials.  You do not need to register with Fedex or open an account with them. Say goodbye to poop smuggling!

The complete test kits by the labs contains requisition forms and customs declaration forms, so if possible make extra copies of the customs declaration forms for Fedex and for yourself just in case. We have found that other courier companies in Malaysia will refuse such shipments. Many parents have wasted their time calling UPS, DHL, PosLaju and other courier companies, only to be rejected. In the meantime, the clock is ticking because we worry about the viability and freshness of the urine and stool. However with Fedex, we get no issues at all.

Apart from urine sent to the French lab, time is of the essence when you courier out your test kit to the US labs. It usually takes 3-4 days for Fedex to deliver from Malaysia to the USA. Therefor, consider what day you are sending the package off. If you send it off by Fedex to the US lab on Monday, chances are, it will arrive on Thursday, even with any complications or customs delay, it will reach by Friday. If you ship it off from Malaysia on a Friday for example,
courier companies will still ship it over the weekend so your package will arrive at the lab perhaps on Monday or Tuesday. However I prefer not to ship out a package to the USA on Wednesdays and Thursdays. Chances are, it will arrive and cleared by Customs on a Saturday or Sunday. So it will remain in the Fedex storage facility in the US over the weekend as they only do deliveries Monday-Friday. Also take note of public holidays in the US, in case the day your package is schedule to arrive on a holiday, thus meaning another day’s delivery delay, your stool and urine sample sitting in a hot warehouse with an already melted ice pack.

With hair samples, there’s not much issue. Blood spot tests are easy to do ourselves at home and will not raise too much issues with Fedex or customs. However, for tests that require blood or plasma serum samples, this will be discussed in another article.

Even if you don’t have a Fedex account, they will still accept it. You will have to pay yourself for the Fedex courier cost for international patients. The labs usually provide a pre-paid Fedex shipping docket, but that only applies to USA deliveries,. However, they are super efficient and doesn’t give you any hassles about sending non-hazardous biological materials unlike other courier companies. When you call for pickup, they usually arrive within the day to your house or office, they will ask the location you are shipping to and the estimated weight of the package. They will give you the estimate cost, however the pickup guy will weigh it when he arrives at your place and give you the exact cost. So you can then pay him in cash.

To make the tests cheaper, you can opt to omit the “recommendation” pages at the end especially for the OATS and Food Intolerance IgG. Most of those recommendations are usually not beneficial plus costs you additional money. We just need the test result and the analysis. The supplement recommendation in the OATs are to me unnecessary and inaccurate as it is based purely on that 1 test, rather than the overall biochemistry of your child. If your doctor or biomedical practitioner rely too much on the supplement recommendation at the back or base your child’s treatment protocol solely based on the OATs supplement recommendation report, then I would be wary. Because a trained and experienced biomed clinician wouldn’t depend too much on it, most experienced biomed doctors don’t even request for it for their patients as they find it a waste of money for the family. The IgG food Intolerance test also have an option to include the Dietary Recommendation, which to me is unnecessary and an extra waste of money. What is important is the test results of the reactive foods itself, we don’t need to pay extra money for a meal planner which is usually based on a typical American kid’s diet anyway.

Before you order your own test kits, please verify with your own Biomed doctor first the exact name of the test required, which labs he prefers and then reconfirm that the test kit you are going to order is the exact same thing. Otherwise you just might end up doing the wrong test and lose a lot of money and time. Remember, there are many stool tests or urine OATs test, you need to choose which one in the list is the one recommended or requested by your doctor.

Earning pocket money by mowing Atok’s lawn

Now that we know there are many options on how to obtain our own test kits at more affordable prices, doesn’t mean that you should start doing random testing by ordering other types of tests other than recommended by your doctor. Financial constraints are always a concern, I believe the bulk of our budget should always go towards appropriate foods, supplements and treatment consults. Remember, tests are just a guideline. The overal treatment plan should be based on patient history, your child’s unique medical issues and your own parental observation. An experienced biomed doctor will only recommend you to do specific tests that he or she feels are necessary based on your child. Most importantly, the doctor should know what to do with the results and how to treat the issues as laid out in the test results. Otherwise you end up with a bunch of useless expensive tests and no way to go forward.

We find that in certain countries in Asia, overseas biomedical tests are imposed with huge taxes or markups, some to a ridiculous extent. Recently, I was quoted US$500 per child for a particular test via a middle-man lab. I went home, did my research and found out that I can order the test kit myself from the actual testing lab and that it will only cost me US$80! Ridiculous right?? Especially the fact that I’m paying for 2 daughters’ biomedical treatment, every cent counts. If I didn’t have my own initiative, I would have lost US$840, what a rip off!

Therefor we should take the initiative to find other cost saving measures. If your doctor or the local labs are not able to help you source cheaper options, then please join the KL Biomed forum at http://health.groups.yahoo.com/group/klbiomed/ . There are many experienced Asian parents who are very proactive and resourceful. We can all learn a lot from each other and find ways to economise.

In the US, it is customary for patients to submit the samples directly to the labs themselves and pay for the cost of the test directly to the labs, at the exact price with no additional markups. In the US, the patients even source their own supplements. For speciality compounded supplements, their doctors will send the prescription to the compounding pharmacy, and the parents deal directly with the pharmacy for delivery, cost, payment and other issues. In Asia, we are used to having the doctor spoon feed us everything from providing test kits to selling supplements. Yes it does make for convenience and I am grateful to doctors who have made things easy for me and my kids. I’m all for convenience but not when I’m being taken advantage of and paying 600% mark-up. Even with the additional delivery charges, I am still better off.

If you are on a tight budget as many of us Autism parents are, be proactive in finding other means to reduce your cost. In South East Asia, it is unfortunate that biomedical treatments are considered to be Autism treatments only for the rich. I hope to see that in the near future, biomed will be more and more affordable and accessible for all children with Autism, ADHD and related disorders. Treating Autistic children’s underlying medical conditions should be affordable and available for every child, not just for the rich.

>What To Expect During Your First Biomed Consult

>As part of our Autism journey, we have met many people especially in the medical and special education field. Some have been incredibly helpful, many were not. And because Autism is such a complex disorder, we often have to resort to second opinions. So, like most Autism parents here, we have had many many consults with doctors and other professionals. Preparing for a 1st consult is important, not only do we sit together to discuss our child, we are also trying to size up the person sitting across from you, whether this is the right person to guide you in the journey towards recovering your child. 

Apart from medical degrees and other professional diplomas, we also base it on their bedside manner, how they treat our child and us, whether they are respectful or condescending, if they have the right attitude, whether they think they know best and disregard the parents’ opinions. Most of the time, the professional that listens to the parents are usually the best for us. A plethora of degrees and certifications doesn’t impress us as much as willingness to listen and learn, being open minded and considerate. They don’t have to be my best friend, but they have to be willing to work together with me. I don’t want someone to steamroll and override me, neither do I want someone who will blindly follow my wishes and not contribute to the occasion. Though we are not medical experts, we are the experts where our children are concerned. We know our child best and a good doctor will listen and take into account your opinions and your views. 

For some reason, we have consulted with a total of 6 biomed doctors in the 2 years since we implemented an intensive biomedical treatment for our 2 girls. Not to mention countless other professionals including mainstream medical doctors, naturopaths, homeopaths, psychiatrists and psychologists, behavioral specialist and special educators.

When seeing a new Biomed doctor for the 1st consult, I would prepare the following to ensure that we get the most out of the time provided. Most consults are 1 hour though some doctors require even up to 1.5 hour to 2 hours for the first consult. Though some parents initially balk at the seemingly long time for a consult, I usually find that it’s never enough. Most parents are used to very quick doctor’s visits, ranging from 5-15 minutes. Usually, the wait in the waiting room is usually 5 times longer than the actual consult! The irony is, when observing other patients in a pediatrician’s waiting room, the parents and child gets swished in and out within 10 minutes with either vaccination shot or antibiotics. Whereas if we come in and mention that we would like to put my child on the GFCF diet or do a simple fungal infection test, we get lectured by the doctor for an entire hour!

For the first consult, you must bring your child along. It usually involves a thorough discussion of the patient and family history. His symptoms and behaviors, medical history such as vaccinations, diseases, chronic medical issues and any hospitalizations. The doctor will also ask you about the pregnancy and birth. I advise you to bring all medical and psychological tests done just in case the doctor might find it useful. During the first consult, the doctor also conducts clinical/physical examination, what they look for depends on what issues are suspected during the course of the discussion. Time is also required to obtain test samples, discussing treatment options, how to prioritize treatments, regarding supplements dosages and how to go forward.

Some parents prefer to let the doctor lead the session, satisfied to answer any question posed to them. Other parents come armed with a long list of their own questions to ask the doctor. Though it may seem that the 1 hour consult is a long time, we need to use the time wisely. I suggest you do some reading up beforehand so that we don’t waste the time with simple questions such as “What is Gluten? What is Casein? Can my child eat this or that?” Also, reconsider some of the questions you may have, think whether the foreign doctor would really know much about certain obscure traditional herbs or whether a certain local dish is suitable for your child.   

Do prepare a list of questions beforehand in case you forget. Communicate to the doctor your priorities, for us it was sleep and constipation, for others it was speech, for some it was aggressive behavior. Don’t forget to bring pen and notebook or, as I do, my trusty iPad to jot down my notes. During consults when my husband is not able to attend, I can easily email the notes to him. I frequently refer back to these notes later on.  

The clinic will probably provide an ice pack for chilled supplements if any. But if you are not going straight back to your hotel room afterwards, or you are facing a long drive back to your home or you are flying back, I suggest bringing an insulated bag for the chilled supplements just in case of delays.

Some parents buy more than 20 supplements (which I do not recommend) thinking that they can save on a trip and delay the next consult, but in the end, the plan usually backfires. Some parents insists on getting more supplements from the doctor, thinking more is better. For me, I prefer to buy only enough supplements that I think I can safely introduce or implement within the time frame before the next consult. On average, 6-7 supplements for the first consult is a comfortable figure for me, however this is highly subjective. Some doctors do not supply any supplements at all, some parents prefer not to buy from the doctor.   

Remember, please introduce each supplement slowly, keep track with a daily log, in case of side effects or unsuitability, you can quickly identify which supplements caused it. When first starting with Biomed, go cautious. We cannot predict which supplements will backfire on a child, some kids have trouble even on vitamin C, cod liver oil or probiotics, these are all basic supplements. Starting at half or even a quarter dose, I would slowly increase the amount every 3 days. However, some parents prefer to give all at once and later should any unbearable side-effects occur, they will deal with it when and if it comes. It is up to you how you wish to introduce new supplements. However, when it comes to medications eg pharmaceutical non-natutral antifungals, antibiotics, antimicrobial or antivirals, then it’s recommended to straightaway go to the full dosage.

Please check beforehand if the doctor accepts credit card payment or only cash. The consult is generally 1 hour, but check beforehand how long is the first consult going to be. I would add an additional 20-30 minutes to collect test samples if required as well as checking the supplements given and verifying the price or dosage. I suggest bringing toys, game consoles, drinks and snacks or even portable DVD players to occupy your child during the consult as well as during the trip.

Typically, the doctor would recommend several tests. However, this is not a definitive list as each child is unique, thus tests would depend on the child’s unique issues. If cost is an issue, you can ask the doctor on staggering the tests perhaps, prioritizing the ones recommended to do first etc. Also, different doctors have different preferences on what tests are required. These are the list of the common 4 tests required; however some doctors may request for additional tests depending on the child’s needs;

Basic 4 tests-  
1. IgG Food Intolerance Test- this is a bloodspot, requires a prick on the finger
2. Comprehensive Stool Analysis- stool sample.  
3. Organic Acid Test- commonly referred to as OATS test, need first morning urine sample 
4. Hair Analysis- hair cut from the roots, minimum 1 inch long

Additional tests depending on child and doctor’s practice-
1. Urine Prophyrin- urine sample, do not expose to light
2. Blood tests – Complete Blood Count, Kidney & liver function, IgE etc.

There are ot
her tests required, but generally these are usually done at a much later stage when you are ready to implement Tier 2 and Tier 3 protocols.   

Some kids are not toilet trained or non-compliant. Some kids can’t urinate or poo poo on demand so I suggest you bring urine and stool samples with you. Please collect the samples at home, bring 2 x urine, 1 x stool. Bring 1 urine sample for OATS from first morning void, if it’s too diluted it may be rejected. In separate container 1 urine taken in the dark, anytime is fine. Cover this container in foil, do not expose to light in case you need to do urine prophyrin test. For stool test sample, you must stop antibiotics, probiotics, antifungal, digestive enzyme 1 week prior. If  there’s not enough time, inform the doctor and bring the complete test kit home and send it to the lab directly from home. Make sure samples are not contaminated eg stool in urine. Please fill all containers till full just in case. 

Samples must not be more than 3 days old. Place in sterile containers (get from local clinic or labs) and keep in the fridge. Transport it in insulated bag with ice pack. Otherwise, get the complete test kit from the clinic, fill it up at home and courier to the labs directly. If so, you must explain to the nurse you are sending it yourself to USA from Malaysia or your country. Otherwise they won’t give you the complete test kit which also includes the customs declaration form. The Hair Analysis requires hair to be 1 inch long minimum. Please wash hair the day before with organic shampoo, as you don’t want the hair to be contaminated from chemicals, thus skewing the results. The blood draw may be required in some cases eg the doctor will advise to do kidney and liver profile test for kids with suspected liver damage. 

If your child is not already on the GFCF diet, be prepared to do so as the doctor will definitely ask you to start it asap. Most doctors also recommend to go soy-free and egg-free too, even before the test results come out. In fact, you can start it now. Discuss with your doctor how often you are expected to consult and if you need to bring your child to each consultation. Some doctors prefer to see you every month, some prefer every 2 months. Commit to seeing the doctor regularly for consults, include the trip expenses into your budget. By showing your commitment to the doctor and to his protocol, the doctor too will in turn show you his commitment, often trying harder and harder for your child. I strongly suggest getting a 2nd opinion at least once a year. However, it is too soon to decide to change to a new doctor after just 1 consult. Usually, I suggest 2-3 months to see whether his protocol is suited with your child before you decide to change doctors, unless of course you have very strong reasons to dislike him or her.  

I hope this helps in preparation to seeing a Biomed doctor for the first time. The information above is mostly relevant to the current Biomed practice in Malaysia, Singapore and Indonesia. The first consult is usually the most stressful I find. Even after doing many consults, I still need time to prepare before each and every consult, wanting to make the most of my face to face time with the doctor. I have learnt from each and every biomed doctor I consulted with. I wish you and your child all the best and hope that you find the consult fruitful.

>Bathrooms, Big School and Uniforms….

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…..

>Hospitalised Again

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

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

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

>KL Biomed Forum

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

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

>Blood Draw

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

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

>All About Yasmin

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

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

>4 DANs and Counting

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

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

>No Magic Pill


Many parents expect miraculous results, especially with the GFCF diet. And feel like giving up on biomedical altogether before they’ve even gotten past the 1st step. But please remember that the diet alone is not biomedical. There is no one magic pill or treatment, you need to implement a combination of diet, supplements and treatments.

GFCF diet is only a baseline diet, it is important to stay on the diet as it is the cornerstone for biomedical treatment. You’ll need to do the IgG Food allergy test to determine any food intolerance. Depending on your child, he may need to do the Low Oxalate diet, the Feingold Diet, the Specific Carbohydrate diet, etc – you will need to do the test to determine which diet is the best for your child.

The OATs urine test will tell you your child’s nutritional status. This test will be your guideline as to what vitamins and minerals you need. You must resolve any gut issues, even if there are no signs of gut problems. If you are not able to detect any outward symptoms of gut dysbiosis, the comprehensive stool test will show you markers for any inflammation, leaky gut, fungal overgrowth, any lack of beneficial flora etc. Please remember that 90% of children with Autism has gastrointestinal dysbiosis. There is a strong gut-brain connection, so healing the gut should never be overlooked. Next, your doctor will put your child on various other 2nd tier supplements based on your child’s needs. What works for Maya may not work for you because every child is unique.

I strongly urge you to do your medical testing with a DAN! doctor, otherwise you may find that the tests you’ve done are inconclusive or the wrong tests. A doctor who has not had any DAN! training will not know what tests to do or which labs to order the test kits from.

We have done hair analysis for heavy metals, IgG Food Allergy test, comprehensive stool testing and Urine Organic Acid tests. Based on the test results, Maya’s list of supplements include multiple vitamin support including B6, Vitamin C, Vitamin E, Magnesium, Zinc, Calcium, cod liver oil, B12 injections, . Up to 50 Billion CFUs of probiotics daily, prebiotics, 3 different types of digestive enzymes, Taurine as Amino Acid support. We do daily Epsom Salt baths to support the sulphation pathway, apply Glutathione lotion daily (glutathione is the body’s key detoxing element), melatonin for sleep, mild detoxing agents which includes chlorella and sulfation support.

When we first started methyl B12 shots, we did 0.3ml every 2 days. But we did not see the amazing improvements that we usually hear of. Upon consult with Dr Erwin, he advised us to increase the dosage to 0.4ml. The changes were amazing. With other supplements, we’ve had to adjust or reduce dosage depending on Maya’s reaction.

We are currently on our second anti-fungal treatment/yeast protocol, we have done a short course of antibiotics for bacterial infection and are about to start anti-viral treatment with Valtrex. Our next steps include Oxidative Stress support treatment and further testing for Essential Fatty Acids and for Red Blood Cells Elements test.

We are still trying to find amino acids that Maya can tolerate. Apart from taurine, Maya has regression whenever we’ve put her on other amino acids including glutamine. Detox agents such as Zeolite also caused regression. With some supplements, we are able to see improvements immediately and able move fast on to the next supplement. With some, we’ve had to go very slowly.

If you wish to implement an effective biomedical treatment for your child, you need the help of an experienced doctor who has been specially trained by DAN. You cannot expect a typical pediatrician, GP or other specialists to help you with this if they have not been to a Clinician’s Seminar run by Defeat Autism Now!.

There will be ups and downs with any treatment you undertake, nearly all supplements and medication you take will have side effects. It is up to you to learn what constitutes temporary regression and to see the signs when a particular supplement is not working.

Please do not give your child random supplements based on someone else’s treatment protocol, you need an individualized treatment plan based on your child’s unique biochemistry. Just as every child’s Autism symptoms are different, so are the biomedical treatment protocol. The guidance of an experienced DAN! doctor is very important. You will need to try many supplements and treatments and find the right combination for your child. You may even need to find another DAN doctor that suits you. We personally have gone through 3.

There is no magic pill that will cure your child, however there are many therapies and treatment options available. In order to find which works best for your child, you need to give it a try. And keep going to the next level.

>A TEST of Patience

As Autism parents, we are subjected to numerous tests and evaluations from doctors, child psychiatrists and clinical psychologists. And these tests are just to confirm that yes, your child has Autism. What next? Therapy and more therapy.

Now that we know there are biomedical interventions that can help our children recover and we’ve done the basic steps that I’ve listed in the previous blog, and you’ve done your research, you find out there are MORE tests to be done, sigh……. So, what are these tests we need to do? Where can we do them? How much does it cost?
1. IgG Food Allergy – This is to test for delayed immune response and for food intolerances. Unlike the IgE, which is the most commonly used food allergy testing, IgE tests for immediate immune response such as common allergic reactions to peanuts and seafood. Going back to IgG, this is the test where you’ll discover intolerances to gluten & casein and others too.
In Malaysia, to do the IgG test requires drawing of blood up to 1 – 2 liters sometimes. It’s extremely traumatic for any parent and child to go through this, it took 6 people including me to hold Maya down when we did this previously. (Ironically, those tests were inconclusive and it was a complete waste of time, money and unnecessary trauma) Dr Erwin Kay has specially ordered test kits from a trusted lab (www.usbiotekcom) that only require a bloodspot – where the doctor only pricks the end of the little finger, and rubs the drops of blood onto a test pad. Maya barely even noticed it.
We did the IgG Asian Food Panel for 96 food items by US Biotek. Cost – SGD$460.00 / RM1,110.00. If you choose to do it in Malaysia, most hospitals and labs would charge RM50-70 per food item. You’d usually have to test >30 food items. A parent told me she was quoted RM300 for ONE food item! These cost do not include the consultation, lab services and other items for such procedures.
2. Comprehensive Stool Analysis – This is to test for bacteria, good and bad flora levels, fungal and yeast overgrowth, immunology, digestion, for any inflammation and fatty acids levels. You MAY be able to persuade your local doctor to do a stool test for fungal and yeast, though it would not give you a comprehensive look at your child’s digestive system and other metabolic markers. Our test from Doctor’s Data (www.doctorsdata.com). Cost – SGD$540 / RM1,300.00
3. Urine Organic Acid Test – This is to test for nutrient levels, vitamin markers, cell regulation, detoxification markers and others. We did the testing by Metametrics (www.metametrics.com) and we found Maya had amino acid insufficiencies, oxidative damage, lethargy, impaired detoxification, yeast infection and others. Cost – SGD$850.00 / RM2,060.00
4. Heavy Metals testing – you either do hair analysis or a DMSA challenge test (urine). This is to test for mercury, lead, aluminum and other toxic heavy metals. We did a hair test with Dr Sundardas in Singapore (www.naturaltherapies.com) by the lab Trace Elements, Inc. Cost – RM425.00.
Where can we do these in Malaysia? Through reports from other parents and my own experiences we find that when we go to the GP or pediatrician, (our collective experience with numerous doctors in numerous hospitals) we encounter a lot of negative responses such as `you’re over-concerned’, “these are unnecessary” or “you’re over-testing”. We parents know that our children have health issues and in order to get the appropriate treatments, we need data from these tests. I would recommend to go directly to a DAN! doctor either in Singapore or Indonesia. Otherwise, expect a battle of words with your doctor and expect to go home totally infuriated & frustrated.
While waiting to see a pediatrician recently, I noticed that it takes less than 10 minutes for a doctor to diagnose a patient and send them home with antibiotics, whilst it took Paul and I a full 1 hour to beg, plead and convince the doctor to do these tests. The `wait and see’ approach should not be applied to any child who’s suffering from chronic constipation, diarrhea, chronically ill from fever, colds and flu, or exhibiting self-injurious behaviour such as head banging, because we the parents know that our kids are in pain, all the time.
These are the basic tests that you usually do, depending on your budget, talk to the doctor whether you can do this all at once or if you wish to stagger it. You may have to do more testings, but that would probably come at least 1 year later, after you’ve addressed all the issues found from the first tests. Good luck & share your experiences with me and others. There’s a lot of rainbows in the sky, if only we keep looking for it.