>More Biomed Doctors in Malaysia

>I’m happy to announce our 3rd Biomed doctor in Malaysia. Dr Yee based in Melaka has been a great source of support to the Autism community especially to Melaka families. I would like to welcome him to our ever growing list of integrative biomedical practitioners in Malaysia. Dr Yee attended the ARI Conference in California in October 2010. Please see below for his details;

http://www.autism.com/pro_clinician_details.asp?c=530

Dr Yee Kok Wah
49 JCN Melaka Raya 13, TMN Melaka Raya Phone: 606-282 8088
City: Melaka  |  Country: Malaysia Email: Siberku@yahoo.com

I also list down the other 2 biomed doctors in Malaysia;

Sui Yin NG, MBChB, MNLP
Suite 116, 1st Floor, Medical Office Building 282, Jalan Ampang Phone: 603-42576998
City: Kuala Lumpur  |  Country: Malaysia

Eddie Chan, MBBS, MRCP(Edinburgh), MRCPCH(London)
16 Jalan Puteri 4/2, Bandar Puteri Puchong Phone: (60) 3-80623925
City: Puchong, Kuala Lumpur  |  Country: Malaysia Email: eddiecsh@hotmail.com

When choosing to work with a biomedical doctor or nutritionist, please read the introduction by ARI on the clinician registry. http://www.autism.com/pro_danlists_results.asp?International=true

Please refer to https://spectrummum.wordpress.com/2011/04/19/spring-2011-ari-conference-atlanta-georgia/ for the latest information regarding biomedical doctors in Malaysia.

>Juggling Doctors and 2nd Opinions

>Many parents ask me whether I still consult with certain doctors, why do I consult with other doctors for 2nd opinions, is it because I do not trust the first doctor, how do I choose whose protocol to implement, how do I handle conflicting opinions and so on.

As you may know, both my daughters are still on biomedical treatments. Initially for Maya when she was diagnosed with Autism, and even though she has lost the Autism diagnosis, she still has lingering health issues. And Yasmin was regressing into Autism and prevented her from fully developing Autism. She is no longer at risk for Autism however like her sister, there are still medical and health issues to be addressed and monitored. Whichever doctor I consult at that time may depend on which specific issues I believe that doctor may have better expertise in.  At times, I need a fresh set of eyes to give me a new perspective in certain matters. It also depends on whether that doctor has experience in certain products or technology which other doctors may not have access to due to where they are located or their training.

If I feel that a current doctor has exhausted his bag of tricks, that things have stagnated then I know it’s time to get a new set of perspectives. Remember that different doctors have different training, experience as well as seen a different set of patients. Also each doctor has different priorities and will emphasize on certain issues and may not have the same set of priorities as I do at that point in time.

So far, I have consulted with Dr Sundardas, a naturopath in Singapore, Dr Erwin Kay, an MD from Singapore, Dr Mark Westaway, an Australian MD who practiced in the UK but has since moved on to join the prestigious TRANSCEND research team in Harvard, Dr Rina Adeline, an MD and lecturing professor in Indonesia, Dr Anthony Underwood, a Syndey based MD specializing in Autism, Dr Kyle Van Dyke, an MD in the US who is also a frequent speaker at Autism Research Institute conferences, Dr Jeff Bradstreet, an MD in the USA who specializes in Autism, a member of the ARI and frequent speaker at Autism conferences internationally and Dr Michael Beilby, an Australian MD who also trained in holistic medicine and practices homeopathy. Majority of them are Medical Doctors. I consulted with these doctors for their different expertise for my 2 daughters, both with different sets of medical diagnosis and issues. I have learnt much from each and every doctor, they have helped my children in different ways, some more than others. Take note that I don’t jump from one doctor to the next after just 1 consult, I generally stick with one doctor and his protocol for at least a few months, otherwise it would be too soon to tell if his protocol is effective or not.

Because I live in Malaysia, certain products and supplements are not easily accessible to us here. Some doctors I chose from specific countries where they can get access to certain supplements. Some doctors are limited by their own country’s health regulation as to which products or treatments they can prescribe or practice. There are certain things a USA based doctor can do which a doctor in another country do not have access to and vice versa. Also some doctors are not able to supply certain products at a reasonable cost due to high taxes imposed by their country of residence. So I look to my other doctors to supply that particular product at a more reasonable cost. Dr Van Dyke and Dr Bradstreet both have children affected by Autism, whereas the other doctors do not if I’m not mistaken. They have different outlooks in matters of practice because they have gone through what we as parents live through every day. They have experienced firsthand how Autism devastates a family. However, all the other doctors still provided the same amount of commitment and support to us even though they do not have children with Autism themselves.

I don’t find any of their opinions to be conflicting, instead I find them to be a different perspective. And that’s what I’m looking for, to explore all opportunities and try different supplements. Each doctor has their own set of preferred protocol, dosage and supplements or medications. Some protocols worked spectacularly on my girls, some were appropriate for Maya, some failed in Yasmin and vice versa.

I have experienced the utmost professionalism and commitment from all my doctors. And each one has helped us get closer and closer to Recovery. I am open with my doctors on who I have consulted with, what protocols have worked for us and what has not. And I ask their help in improving the current protocol as well as exploring other issues which may not have been covered by a previous doctor.

I thank the doctors for their commitment in treating infections and GI disorders, I respect doctors for their willingness to explore different chelation protocols, I am grateful to doctors who prioritize the girls’ immune dysfunction, mitochondrial issues and low weight gain. I cherish the doctors whose advice brought on a huge leap in progress in better sleep, wearing clothes, toilet training and improved speech. I am blessed with wonderful doctors who support me whenever I  bring up a new treatment that I learnt from a recent conference and their willingness to explore other possibilities with me. To their credit, they have never rolled their eyes at me whenever I come up with yet another hare brained scheme or whenever I debate with them over a difference in opinions. I have never been belittled for my ignorance, instead they support me in learning more about another treatment.  

I am thankful for doctors who take the time to reply to my incessant emails. I apologize to doctors who have had to pick up the pieces whenever I try a protocol that failed, yet never were we reprimanded for trying new things. I received support, encouragement, hope and sage advice from each and every doctor. Most of all, I am thankful for doctors who listen to mothers.

It doesn’t mean that we should take all Doctor’s advice at face value and follow all instructions meekly. Many parents are afraid of asking what they think are stupid questions, there are no stupid questions. If you have an opportunity to ask and learn, do it. If the Doctor’s answer doesn’t satisfy you, ask again. Sometimes, the doctor is not good at teaching or explaining, rather they are better at actually doing than teaching. I don’t look for someone to hold my hand throughout this journey, the Doctor’s job is to recover my children, not to give me a one on one biochemistry lesson.

Many doctors don’t have the time to teach us how a supplement or medication works, I would rather use the consult time to interpret lab tests, discuss patient history, work on specific issues and how to rectify them. It is up to us to learn why doing Mb12 injections are crucial even though the test reports high amount of B12 anyway. No offense to them, many doctors are better at practicing medicine rather than giving a presentation or lecture on biochemistry. Some doctors speak in medical terms, and not able to relay the information in simpler language that us parents can understand. But all that doesn’t matter to me, what matters is that they are committed to our children and that our children thrive and improve under their care. 

In my opinion, parents doing biomedical intervention should get a 2nd opinion at least once a year, ideally every 6 months if you can afford it. However, if you feel that having 2 different perspectives to be too difficult to manage and the result is a lot of confusion, then it’s best to stick to just 1 doctor that you are comfortable with. However, don’t get too comfortable or be too much in love with one particular doctor that you get tunnel vision. Open up yourselves to other opportunities and opinions, the opinions may conflict but it may open up yourself to other possibilities. 

On how to choose whose protocol or dosage to follow, I rely on the doctor’s point of views, my own research as
well as my intimate knowledge of my own child. Science has not evolved enough to predict which protocol is best for a child. It is up to us to try it out and observe for improvements or negative reactions. Report the outcome back to your own doctor and move on from there.

Some parents upon getting a 2nd opinion, get confused whose advice to follow, the first doctor or the 2nd doctor’s. Firstly, if your first Doctor’s protocol is not working, then it’s time to change to a different protocol right? Secondly, if the protocol is working, you have a choice not to follow the 2nd Doctor’s advice. However, the whole purpose of 2nd opinions in my view is to challenge me to try a new direction. If I’m afraid of change, I wouldn’t have gone for a 2nd opinion right? It would be a shame to go seek a 2nd opinion and yet you refuse to try the new treatment he suggested. Might as well have saved your money and stick to the same doctor. If you are happy with your current rate of progress, then great and stick with what works. But don’t go for 2nd opinions just because your friend did it, do it because you want to achieve something else you feel has not been addressed. Like I mentioned before, don’t do a test if you are not willing to do the work required once the results are out. Subsequently, don’t seek a 2nd opinion if you do not want to deviate from your current protocol. I do it because I know there is always something new to be explored, always a new treatment or a different protocol that we haven’t tried.

I do not recommend anyone to consult with so many doctors, I never set out to ‘acquire’ that many doctors. Some doctors were better for Maya and some doctors were better for Yasmin. Not every child will require that many doctors to get to recovery, many children thrive under the care of one doctor. However, both my girls present a different set of complexities that some children may not have. Yasmin in particular was harder to treat compared to Maya.

I chat with our Malaysian biomed doctors occasionally, I also hear from many parents on their views of different doctors. I know more and more parents who are passionate in treating their children’s medical issues due to Autism, many consult with a doctor and many choose to do it solo. For those who choose not consult with a doctor, I also encourage you to seek advice not just from one source of information. I admire their courage and confidence in going on this journey without the help of a medical doctor. I learn a lot from biomed parents, their insights and knowledge of their child’s treatments are valuable.

It’s just a matter of opportunity, and you know that I am never one to let an opportunity to pass me by. If an opportunity comes by, I grab it. Time is  too precious to waste and my children’s health are my priority. Never stop learning, whether it’s from books, other parents, health forums, conferences or doctors. Whether you chose to treat your child’s Autism with mainstream medicine, behavioral therapy, alternative treatments such as Biomed or homeopathy, with a Medical Doctor, a holistic naturopath or going solo on the advice of friends, however you choose, remember to keep moving forward. Avoid tunnel vision, explore all opportunities and most of all, ensure the health and safety of your child at all times.

>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.

>DAN Doctors in Malaysia

>

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

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

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

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

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

>Biomedical Treatments For Autism Spectrum Disorder

>

KL Biomed Invites You To:

A PRESENTATION BY DR RINA ADELINE, MD

A DEFEAT AUTISM NOW! DOCTOR


Time: 7:30pm – 9:30pm

Date: Tuesday, 9 February 2010

Refreshments will be served

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


Registration Fee: RM100.00 per person

Family & Friends Special Offer:

Register for 2 attendees for only RM180.00

Register for 3 attendees for only RM270.00


About Dr Rina Adeline, MD

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

What Is Biomedical?

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

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

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

To Register

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

>Prioritizing Treatment

>

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…..




>The Year That Was…..

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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




>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.


>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!

>Singapore vs Indonesia

>

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