>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.

>My Top 10 Favourites……

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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!

>Bargain Hunters

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

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

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

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

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

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

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

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

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

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

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


>Prioritizing Treatment

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

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

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

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

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

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

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

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

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

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




>Relaxing the Diet

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

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

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

>16 Month Journey

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


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

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

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

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

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


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


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


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


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


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


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


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

>Life After Diagnosis – 2nd Time Around

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

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

>No Magic Pill

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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.