>KL Biomed Support Group 30/4/11 – Melaka

>Dear Friends,

You are invited to KL Biomed Support Group for the first time to be held in Melaka. Please join us for support, practical advice and meet with other parents doing biomedical intervention and other alternative treatments for Autism, ADHD, Asperger’s and other related behavioural and neuro-developmental disorders. Please see below for details; 

Date: Saturday 30th April 2011
Time: 7.30pm – 9.30pm
Fee: RM10.00 per person 
(payment in cash, to be paid on the day of the event)

Venue: Autism Resource Center Melaka
No.12, 1st Floor
Jalan Kasturi 1/12, Taman Kasturi
Seksyen 1, Semabok
75050 Melaka

(Above StarBio Agronomy, 3 story building, facing bungalows, 
Temple at the corner lot, same row as the Lion Club)

Please RSVP by Thursday 28th April with Mdm Ng Kek Kuan by SMS (019-6699285) or email (kekkuan@yahoo.com) with your name(s), email, and phone number.
 
Thank you to Kek Kuan and Autism Resource Centre Melaka for organising this meeting and bringing the support group to Melaka and southern states families. We look forward to seeing you. 

See you soon,
Marissa & Rafidah
KL Biomed (klbiomed@gmail.com)

If you are interested in having a KL Biomed Support Group meet in your city, please contact us.

Sign up to the KL Biomed Forum at http://health.groups.yahoo.group/klbiomed. 

KL Biomed is a forum for parents of children with Autism Spectrum Disorders and other related disorders who are doing biomedical intervention and alternative treatments in Malaysia and neighbouring countries. KL Biomed provides support and practical advice for biomedical and alternative treatments on a volunteer basis. Please sign up to this forum if you are a parent involved in the care and treatment of children diagnosed with Autism Spectrum Disorder, PDD-NOS, ADHD, Aspergers, Apraxia and other related behavioural and neuro-developmental disorders.  

Autism is Treatable! For more information on biomedical intervention, please visit http://www.autism.com

Any information from this group is not to be construed as medical advice. Please consult with your doctor in managing your child’s treatment.

>Communication Shutdown 1 Nov 2010

>

WHAT IS COMMUNICATION SHUTDOWN?

It’s a global initiative to raise much-needed funds for autism groups in over 40 countries. By shutting down social networks for one day on November 1, we hope to encourage a greater understanding of people with autism who find social communication a challenge.
To join, simply make a donation to receive a CHAPP (charity app). The CHAPP spreads the word, gives a shutdown badge to wear online and adds your picture to a global mosaic of supporters, next to the celebs.

Click here to donate and receive your CHAPP Communication Shutdown for Autism

>Which Probiotic?

>

When choosing a broad-spectrum probiotics, it is best to get one with multi-flora rather than single strain. The refrigerated kind are recommended rather than on the shelf. However, even if you do purchase unrefrigerated ones, do store it in the fridge at home to maintain freshness and potency of the live cultures. As most ASD kids are on the GFCF diet, make sure that your probiotic is a casein-free source. Most probiotics are cultured on dairy unless stated otherwise. Specialist GFCF probiotics do cost more however it is worth spending extra money on a quality probiotic.

The usage of probiotics in biomedical intervention Autism Spectrum Disorder is one of the first few supplements to start your child on. The benefits are too many to write here, please see Dr Kurt Woeller’s blog on the benefits of probiotics here http://drkurtwoeller.blogspot.com/2009/06/probiotics-growth-promoting-factors.html


Here are some of the probiotics that I have tried;

1. ProBio Gold 20 Billion CFU multi- we initially used this, it made a great difference because my girls were really low on beneficial bacteria. But after extended use, it doesn’t seem to be as effective and cause constipation for my girls. Contains 4 types of Lacto, 1 type of Bifido and 750 million CFU strep


2. Klaire Labs Therbiotic Complete 25 Billion CFU- contains more strep than Probio Gold but seems to be better tolerated mainly because it has more Bifido strains (Probio Gold only has 1 bifido type) Contains 7 Lacto strains, 4 Bifido strains and 1 Billion CFU strep.


3. Klaire Labs Therbiotic Detoxification Support 50 Billion CFU – high potency probiotic (not broad spectrum) specific for detox support. Has 2 types of lacto and 1 Bifido.

4. Klaire Labs Therbiotic Factor 4 10 Billion CFU- contains only Bifido (4 types). As an add on formula for those who require extra bifido especially helps with constipation.

5. New Beginnings Probiotic Support Formula 20 Billion CFU – multi-strain probiotic with added S.Boulardii. No strep included, contains 4 Lacto strains and 2 Bifido strains and 2 Billion CFU S. Boulardii. It ships out from manufacturer without refrigeration, however recommended to store in the fridge. GFCF compliant.

6. Three Lac – this is a proprietary blend of probiotics and other ingredients, usually used as a natural treatment for anti-fungals. However, it did not have much effect on my girls.

7. Culturelle – contains Lacto GG, good to kill clostridia in most kids. It is very effective in keeping clostridia from recurring. Though it contains very minute amounts of casein, it is generally beneficial to most kids.

8. Sacchromyces Boulardii – it’s a probiotic type of good yeast, that fights the bad yeast.

9. Klaire Labs Biotagen- this is a prebiotic, it encourages implantation of good probiotic as well as natural regrowth. Some children may not be able to tolerate this formulation due to it’s effect in raising sulfur levels, this is child specific.

All of the probiotics have been helpful and effective in some manner with my girls. There is no real favorites here as rotating it seems to work best for my girls. Currently we just started using New Beginning’s Probiotic, there doesn’t seem to be any amazing improvements, but neither is there a bad reaction. Most kids are ok with strep strains in the probiotic blend, however this is child-specific. For my girls, it seems that continued use of Probio Gold and Therbiotic Complete has built-up the strep levels to the point where it affected them, usually tummy ache, constipation, irritability etc. The strep strain here is Streptococcus Thermophilus which is actually a good probiotic, but some children may not be able to tolerate prolonged dosages of it. When first starting biomed without a DAN doctor, you can choose Probio Gold as it is GFCF, has a good range of probiotic strains, it is high potency and it is easily accessible from our specialist retailers in Jakarta and Singapore or to purchase online. 20-25 Billion CFU is a good amount for ASD kids. However, if your DAN Doctor carries a range of Klaire Labs products, then I would recommend Klaire Labs Therbiotic Complete. Klaire Labs products can only be ordered by a doctor, if your DAN doctor does not carry this or if you do not have a DAN doctor, you can try to persuade a local doctor to help you order this from http://www.klairelabs.com directly. However, if you suspect that strep might be an issue, then please find alternative types.

It is recommended to rotate probiotics, by rotating I mean finishing 1 bottle, and for the next bottle to purchase a different type. Not rotate on a daily basis. I would not recommend New Beginnings Probiotic for beginners to biomed as your child may probably not be ready for anti-fungals just yet. However, once you are ready for anti-fungal treatment, then you may try this. Again, this is dependant on whether your child can tolerate S.Boulardii. For higher potency probiotics – VSL#3 is a very high potency multi-flora formulation usually to treat severe gut issues such as ulcerative colitis and Crohn’s disease. It is also beneficial for those diagnosed with Inflammatory Bowel Disease and with high oxalates. Please use this under the supervision of a medical doctor.

There are other probiotic in the market, do not limit yourself only to my list. There is no perfect probiotic that I’ve found (so far) it’s best to rotate and observe which ones is more suitable for your child. Probiotics is high on my list of essential supplements for both my girls.

>Frequently Asked Questions

>

This is a list of questions that parents new to Biomedical Treatments for Autism frequently ask me;

1. Which DAN doctor should I see?

I would recommend either Dr Erwin Kay in Singapore (www.kcsmed.org/autism) or Dr Rina Adeline in Jakarta (www.kibm.org) Both are qualified medical doctors, both come highly recommended by me and other parents currently doing biomed in Malaysia. How you choose depends on your personal preference. Take note that this is not a 1 time consult, you should commit to seeing the doctor for a consultation either once a month or bi-monthly.

2. I want to do biomed. How do I start?
Step 1: Start the GFCF diet, soy-free and egg-free
Step 2: Make an appointment with a DAN doctor immediately
Step 3: Start reading up on basic biomed.
Step 4: Start a Daily Log – keep track of all food, supplements, sleep habits, bowel movements, mood, behavior etc.
Step 5: Consult with a DAN doctor. Expect a comprehensive consultation, the Doctor will start your child on Tier 1 supplements and will advise you on what lab tests are required.

3. Where can I find information regarding biomedical?
These are 2 websites and 2 books I would recommend for beginners to biomed.
Recommended websites:
Recommended books : You can buy both from Kinokuniya online bookstore. They deliver straight to your doorstep within 3 days for only RM8.00 http://bookweb.kinokuniya.co.jp
1. Healing the New Childhood Epidemics by Dr Kenneth Bock ISBN: 9780345494511 RM63.90
2. Healing And Preventing Autism by Jenny McCarthy & Dr Jerry Kartzinel ISBN:9780525951032

4. What is the GFCF diet and why is it so important?
The Gluten-Free and Casein-Free diet is commonly known as the GFCF diet. It is the foundation for future biomedical treatments. Some children show immediate improvement once on the diet, some children do not seem to show any improvements. But please do it 100%. It usually takes 1-2 months to implement the diet. The GFCF diet does not recover your child from Autism,the GFCF diet alone does not constitute biomedical. Please check out this website for more info on the science behind the GFCF diet. FYI, soy milk is not a good alternative, Rice Milk is considered more acceptable for most ASD kids.
Avoid all milk products (cow and goat) including milk, cheese, butter, yoghurt etc. Avoid gluten which is wheat, oats, barley and rye. Please sign up to the KL Biomed forum to learn from other Malaysian parents where to purchase or how to make alternative foods.

5. Where can I do testing?
Many parents who first hear about biomedical are keen to do the basic 4 tests that we commonly talk about. However, I strongly encourage you to have a consult with a DAN doctor first. Based on the consult, the doctor will recommend you as to the appropriate tests for your child. It is not the same across the board, each child has a different set of medical issues. Thus it makes sense that the testing requirements may differ. I strongly suggest you do the tests with your DAN doctor. Only do the tests and spend the money on it if you are prepared to do the Doctor’s recommendations after the results are out. No point doing the IgG food intolerance test if you are still unsure whether you want to do the GFCF diet. No point doing the Comprehensive Stool Test if you are not prepared to do the work repairing the gut.

Also take note that these tests are expensive, they are sent to specialized labs in the USA and Europe. It is not available in local labs. I caution you against doing cheaper and simplified tests that are similar. Based on many parents feedback, this usually ends up costing more money and wasted time because eventually they find that the tests are not comprehensive, are missing some vital test values and inconclusive. Thus they have to spend more money redoing the test with the correct labs. Tests for biomedical in ASD based on the DAN and ARI protocols are usually from Doctor’s Data, Metametrics, Great Plains Lab, US BioTek, almost all in the USA.

I do NOT recommend you ask a non-DAN doctor to do these tests, even though you manage to find the names and labs of the tests that your friends have done. Remember, if the doctor do not know about those tests from those labs, they do not know how to interpret it, they do not know how to properly obtain samples for it and they may end
up ordering the wrong tests even though it’s from the correct labs and they do not know what to do with the results afterwards. You may end up wasting A LOT of money on doctors who are not experienced with it. They MAY be able to get you the correct tests, but do they know how to interpret it and remedy the problems?

6. What is a DAN doctor?
DAN stands for Defeat Autism Now!. A DAN doctor is a doctor who has attended a clinician’s training at the DAN Conference in the USA. The DAN conference is held several times a year by the Autism Research Institute (ARI). A doctor who has not been to a DAN conference and training will not have the knowledge necessary to do biomedical treatments. There are now more and more doctors who are aware of biomedical treatments, however in order to ensure that an effective biomedical protocol for your child, please consult with a DAN doctor. You can refer to this website for lists of DAN doctors worldwide http://www.autismwebsite.com/practitioners/foreign_lc.htm

7. Are there supplements that I can start without a DAN doctor?
Although I highly recommend that you only start on supplements prescribed by your DAN doctor, most parents are really eager to start on them. There are supplements that you can start safely now. This is a list of Tier 1 supplements that is commonly required by most children with ASD. However, due to the fact that each child has their own set of unique medical conditions, please take note that however `safe’ a supplement might be, you run the risk of side-effects. Therefor you should only take supplements and medications based on your doctor’s advice.

This is just a general guideline and not to be construed as medical advice. Please take note that you should always start the GFCF diet first. The list below is the daily recommendation appropriate for a child weighing 13kgs and the product I give my children:-
1. Vitamin B6 P-5-P – Kirkman’s, Brain Child Nutritionals and New Beginnings all have their own formulations
2. Vitamin C – 1500mg
3. Calcium – 1000mg – Kirkman’s Calcium powder
4. Cod Liver Oil – 5ml (free from mercury source, either Kirkman’s or Nordic Naturals)
5. Zinc – New Beginnings Zinc Picolinate 25mg
6. Magnesium Glycinate – 300mg – Kirkman’s Magnesium Glycinate Powder BioMax series
7. Probiotics – 20 Billion CFUs (dairy/casein-free source) – Kirkman’s ProBio Gold
8. Digestive Enzymes DPP-IV formulation – Kirkman’s EnzymComplete DPP-IV
9. Digestive Enzymes for phenols, oxalates & salicylates – Kirkman’s Phenol Assist
10. Epsom Salts baths – 1 cup of Epsom Salts dissolved in warm water, soak for 20 minutes
11. Reduced L-Glutathione Lotion by Kirkman’s – apply 5 grams daily to back of the neck

These are the basic supplements that I am comfortable recommending to my friends. I would not do any other supplements or treatments without the guidance of a DAN doctor. Again, start with a 1/4 dosage and slowly work your way up. Always introduce 1 supplement at a time.


8. Where can I buy these supplements?
They are not available in pharmacies or hospitals in Malaysia. We usually purchase them from our DAN doctors, trusted retailers in the country that your DAN doctor resides in or online from the US. All of the above can also be purchased at www.spectrumsupplements.com, they can deliver straight to your doorstep. There are other websites, please check if they can deliver to Malaysia. Please take note that due to Malaysian customs regulations, there may be delays or you may be questioned by customs officials. It is also best to order it yourself and not `tumpang’ with your friends as these are supposed to be brought in for personal use.

9. I think my child is healthy. Why do I still need to do biomed?
A child with Autism Spectrum Disorder may look healthy, therefor we think it’s JUST a behavioral problem. Once you start reading about biomedical treatments, we understand that our children have multiple medical issues that needs to be addressed. By treating these individual medical problems, you gradually find that your child’s Autistic behaviors decrease, speech and language improves and his moods are better too. He can concentrate and learn better from the behavioral therapies and special education classes we send him to. Remember, a healthy body is a healthy mind. You will never know if biomed will help your child until you actually try it. BTW, `trying’ to do GFCF diet doesn’t consist of biomedical. Giving your child some vitamin C and cod liver oil is not biomedical. Biomedical treatment means an intensive and comprehensive protocol based on a trained doctor’s guidance using specialized supplements.

10. I have read the books & websites and I want to start biomedical treatments. I want to start on chelation now!
Most parents when they first start biomedical intervention and learn about the damage caused by heavy metals, they feel an extreme urgency to get rid of these horrible toxins in their child’s body. Especially when they see the results from the Hair Analysis, they want to get rid of the mercury and lead NOW! Chelation is the process of detoxification of heavy metals from the body. This is not the first treatment to start, there are many protocols to go through before the body is ready for chelation. Many children recover without even having to go through chelation. It is very child specific. For most children, you should treat the gut first. You need to repair leaky gut, treat fungal, bacterial and viral infections, address immune deficiencies, replenish essential vitamins & nutrients, repair the sulfation pathways and methylation cycles and many more before you are ready to start chelation. Chelation is advanced biomedical that should be done with caution with the care of an experienced DAN doctor. Always remember, treat the gut first.

11. How much does it cost to do biomedical?
Usually, expect to spend RM5,500 – RM6,000 for your first consult with a DAN doctor. This usually includes the price of the consultation, Tier 1 supplements and 4 basic tests. Again, this is based on the average cost. Depending on your child’s unique medical issues, it can be lower or higher. For subsequent months, expect to spend between RM500 – RM1,500 per month for supplements. There may be further tests required, however the earliest you can expect to do so would be within 6 months if you are doing intensive biomed. Please make sure you budget for travel expenses for regular monthly or bi-monthly consults. Do not skimp on consults, no point doing all those expensive tests and buying those supplements if you do not consult with your DAN doctor regularly.

At first glance, it seems expensive. However, this is an investment in your child’s future. With an intensive and effective biomedical treatment, this may mean that the overall cost of therapies for your child is for a shorter period. Rather than spending x amount of monies on specialised expensive behavioral therapy for 6-10 years, you may find that biomedical has made it possible to bring your child so close to recovery if not completely within 2 years. In the long term, 10 years of behavioral intervention and cost of caring for an Autistic adult is far greater compared to doing biomedical for 2 years. Up until recently, parents of children diagnosed with ASD is expected to care for our disabled children for their entire lifetime, with no hope of recovery or a chance for a normal life.

12. My child is older and behavioral therapy has helped him. Will biomedical intervention still help him?
Biomedical treatments will help any child, young or old. Of course, children who receive biomed treatment before 6 years old have the greatest chance of recovery, the younger the better. The same can be said for behavioral therapy too. However, every child will improve significantly if you treat his health issues. It may not promise complete recovery, however you are giving your child every opportunity he deserves. He deserves good health just like any other child. You owe it to your child to ensure that he has a good diet, he gets all the essential nutrients, vitamins and minerals, that any gastrointestinal disease is treated. Your child needs you to understand that he cannot talk because the toxins and the damage in his body is preventing him from talking. He needs you to understand that sometimes he experiences pain in his tummy or his head and that is why he sometimes causes injury to himself because he is trying to relieve his pain.

He needs you to know that he tiptoes or flaps his hands or moan out loud not because he likes it, it’s because he cannot control his body. Please understand that tiptoe walking should not be remedied by putting your son’s legs in a plaster cast. Usually, toe walking will resolve on the GFCF diet as well as doing yeast treatments. You need to realize that if he has hypotonia or weak muscle tone, exercise alone will not help that. You need to consider that it may be caused by zinc deficiency and most commonly hypotonia is caused by a mitochondria disorder and that there are supplements to help with that. If your child refuses to eat, you need to understand that it is a serious medical condition, not a behavioral issue. Severe feeding issues indicates severe gastrointestinal disorders, you need to take your child to a doctor now! If not a DAN doctor, then to a pediatric gastroenterologist. You need to understand that it’s not `just’ hypotonia or just a feeding issue. It has other far reaching health implications. These are issues that a DAN doctor deals with every day. No matter what his age is, he deserves the best medical treatment you can afford, just like any other child with a disease or medical condition.

13. Your daughter is almost recovered now, but she wasn’t that Autistic to begin with. She was just Mild Autism right?
Maya was diagnosed with mild to moderate Autism. Even though her chronological age was 32 months, her developmental and mental age was that of an 18 month old child. Based on her psychological assessment, Maya was developmentally delayed across the board and was considered Low Functioning. Her ATEC score was 100 when she was diagnosed. No, she was not a mild case. However, her progress has been tremendously fast not because she was an `easy’ case. She had many debilitating behavioral issues and a multitude of medical concerns. However, with the help of trusted DAN doctors and extremely hard work, she has improved amazingly. Biomedical intervention can help mild, moderate and severe Autism. Whether we can achieve compete or only partial recovery, remains to be seen.

I highly recommend you sign up to the KL Biomed forum for localised Malaysian information. There are many Malaysian parents doing biomedical here in Malaysia. It is a good site for information on local biomed resources. As parents of children diagnosed with Autism, we all hope that all the biomedical treatments and behavioral therapies we do will make a significant improvement in our children. By doing both, my daughter has exceeded our expectations.

Maya is curre
ntly interested in weddings, she loves looking at my wedding album as well as wedding pictures from my celebrity magazines. She truly enjoyed going to a wedding recently, even though the noise and crowds bothered her, she was still able to overcome the difficulties and enjoy it. She has insisted on choosing pretty white dresses recently and loved the little veil I bought her. Looking at her wearing her white dress and little veil proudly, I hope to one day attend her wedding. I look forward to seeing her grow up into the lovely sweet girl that she is, for one day I hope she too will lead a full life, fall in love, get married and have children of her own. Whatever her future may be, I am proud of her. Every day, Maya gives me inspiration and strength to go on. She is indeed my angel.


>Whizz Trip

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

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

>A Bump in the Road

>All of you who know me is well aware that I have many things to say and I never hesitate to say it. There are never any short phone conversations, my email responses are very long and as my dear husband can testify, I can talk till the cows come home. Guess what? There is so much more that I don’t dare put into words, for fear of breaking down and not able to get up again. So much more in my heart that I keep to myself, for fear of scaring away the few friends left remaining. So much more words in my head, being suppressed because there’s just no time left to say it because there’s a hundred and one things left on my to do list. This article written by a fellow Autism mum says it all for me. Please read http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html#more

>Reading List

>
Like all Autism parents, I’ve built up a collection of books and reading materials. And in our spare time, we watch biomedical videos downloaded from the Web or in DVD. Many of my reading material and research center around biomedical treatments, however I have read several biographies as well as therapy-based books. Here’s a list of books that has had the biggest impact on me and my thoughts on them;

1. Healing the New Childhood Epidemics by Dr Kenneth Bock 2007 – the writer is a member of Defeat Autism Now!. His interest lies in the 4-A Disorders – Autism, ADHD, Asthma and Allergies. He writes about the very real connections between these 4 childhood disorders. Very persuasive research on environmental toxins, nutritional deficiencies, genetic vulnerabilities and immune systems and how they trigger the 4-As. Incredible biomedical reading for anyone who’s affected by Autism, Asthma and Allergies.
2. Changing the Course of Autism by Dr Bryan Jepson 2007 – the writer is another member of DAN! and a frequent speaker at conferences. His son is also affected by Autism. He writes about the scientific approach in treating Autism. He shows evidence of Autism as a medical disease rather than a psychological disorder. He explains in details how Autism affects other body organ systems besides just the brain.
3. Children With Starving Brains by Jaquelyn McCandless 2007 edition – Step by step biomedical treatment guide for parents and doctors. A bit of heavy reading, in depth and great as a referral tool. Not to be read from start to finish, I find it easier to search the Chapters page and read according to your current research interest.
4. Autism: Effective Biomedical Treatments by Jon Pangborn and Sidney Baker 2005 Edition + 2007 Supplement – Another medical reference textbook however it’s very well written. Written for both parents & doctors, it’s very detailed and has a great section on testing as well as recommended labs. This is my main reference guide for any treatment Maya is doing. This was published in collaboration with the Autism Research Institute, I just wish there’s a more up to date publication.
5. Recovering Autistic Children by Stephen Edelson and Bernard Rimland 2006 Edition – again I wish there was a 2009 edition, however Dr Rimland has since passed away. Introduction on Dr Rimland’s autistic son and his pioneering work in biomedical treatments. There are 31 compelling stories written by parents whose children recovered or at least benefitted greatly from the DAN! approach. These are simple, touching stories on the struggles of these brave parents and their amazing children and the treatments that helped them. And followed by overview of DAN! protocols and biomedical treatments. Unfortunately, most of the personal stories are based 5-10 years ago, and some of the treatment modalities are a bit outdated. However, it’s a good read.
6. Louder Than Words by Jenny McCarthy – a personal story of how Jenny recovered her son Evan from Autism. Heartbreaking accounts of Evan’s seizures and many trips to the emergency ward. The many doctors and professionals she saw and the difficulties she faced with a husband who was not supportive. And lots of references to biomedical treatments and diets that helped to recover her son. I read this book before I knew anything about Autism, neither did I have a clue that Maya had it. But I instantly saw similarities in Evan and Maya, that’s when I first knew Maya has Autism.
7. Mother Warriors by Jenny McCarthy – written after Louder Than Words was published, it’s a collection of Jenny’s personal efforts towards raising Autism awareness. And many stories of parents who implemented biomedical intervention for their children and the successes and failures they encountered. Very easy to read and so compelling that I finished it in one day.
8. Healing and Preventing Autism by Jenny McCarthy and Dr Jerry Kartzinel – this is Jenny’s 3rd book on Autism, written in collaboration with her son’s DAN doctor. Dr Jerry Kartzinel is a very well respected doctor who has recovered many children from Autism. A very easy to read overview of biomedical intervention from a parent’s perspective and from a doctor’s perspective. Topics include diets, supplements, immune system, allergies, candida, seizures, gut issues and recommended products and supplements. It’s not meant to be a comprehensive in-depth guide, however it does a good job of explaining why biomedical treatments are important for your child and what you can do about it.
9. What Your Doctor May Not Tell You About Children’s Vaccination by Stephanie Cave 2007 – everything you need to know about vaccinations and immunizations. In depth look at every mandatory childhood vaccination, what it contains, side effects and how relevant it is. The controversy involving mercury and combined vaccinations are discussed in detail. And some reports of vaccine-caused injury and illnesses.
10. Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm 2005 – the book describes some of the challenges a person with Autism faces. A person with Autism perceives the world differently and their sensory perception are skewered amongst other things. Gives us a brief overview on why they behave in certain ways and most importantly it gives you the opportunity to `view’ the world as they live it. Some helpful hints on communicating more effectively with them and how simple things like lowering the volume of your voice makes it easier for them to understand us. Hopefully we can absorb the lessons and treat our children with the patience and respect they deserve.
There are other books I have not listed here, some are inspirational, some are heartwarming and some are not so interesting reads. I try to reread the books from time to time, usually I would discover something that I’ve overlooked and I always learn something new every time. Most of these books I purchase online from Amazon.com. Unfortunately, the cost of delivery is usually more expensive than the actual books itself.

>Mind Your Language

>
Most children with Autism are non-verbal. They cannot talk, they cannot pronounce proper words, some make unintelligible sounds. Some children develop speech and language normally and then would eventually regress and lose their speech functions. For some, they never acquired any language at all. Language impairment is one of the main symptoms of Autism.

Maya developed language at the appropriate milestone but unlike most children with Autism, she didn’t lose her language skills. Instead, her language development stagnated at a 1 1/2 year old level. At 9 months she said her first word “duck” and pointed at her rubber duckie in the bathtub. By 12 months old, she knew all the alphabet and could say and point at the appropriate letters. And she knew her numbers from 1 to 10. She could pronounce and label many words, she knew all the colors of the rainbow and all the animals. She would happily sing several nursery rhymes. By 1 and 1/2 years, she could count to 20. When asked “Where’s Mummy?” she would happily point at me. When we point to Daddy and ask her “Who’s that?” she’d yell “Daddy!”. Her vocabulary was more than 200 by that point.
However, she never ever called me Mummy, even though she knew the word. She knows the word milk, but when she wants it, she’ll throw a tantrum. She quickly learnt the names of her favorite snacks eg. cookies, biscuits, crackers, ice cream; but when she wanted them, she’d either scream in front of the kitchen cabinet or take our hand and point it to the item she wanted.
She would memorize sentences from her favorite cartoons and repeat them over and over again. This is called echolalia; echolalia is another symptom of language impairment. She would repeat certain sentences all day long. Often, she wakes up in the middle of the night and talk to herself. She would stay in bed sitting up in the dark and we’d hear her talking. “Hello Pocoyo” or “Let’s make a house under the table” or “It’s a blue car” and would repeat it again and again for 2-3 hours. One of the few words she would say appropriately was “Bye bye”. Sometimes to say good bye to someone but more often it was her way of telling someone to go away.
1 week after starting the GFCF diet, she made 1 word requests. 2 months after the diet and ABA therapy, she started to request for things appropriately in 2-3 word sentences. Since we started implementing all the supplements and other biomedical treatments, her language has improved tremendously. And doing more intensive ABA therapy definitely contributed to her growing language (we now do 30 hours of ABA a week). Every morning she’d run to our room with a cheery “Good morning Mummy”. Every time she sees us, she’ll greet us with “Hi Daddy”. She greets all her teachers in the morning and says goodbye to all her school friends. I’m happy to say that we often hear 7-8 word sentences these days.
Here are some famous words from Maya recently;
When she couldn’t find her favorite shoes before going out she said “Let’s go to Singapore and buy some shoes”
When she was playing and one of her dolls were missing she said “Mummy, you better go look for the doll”
One day, she grabbed my hand and dragged me to the bathroom and said “Mummy, let’s go take a bubble bath together”
“Daddy, let’s go to the glass slipper shop” when her Cinderella doll lost her shoes
“No, I don’t want that. How about the princess dress?” when she refused to wear pajamas to bed.
When arriving at her school one morning, Maya said “Oh no, this isn’t the ice skating place”. She was dismayed because recently we took her to Disney Princess on Ice show and loved it.
One day, Maya quietly did a poo and a `pebble’ of it fell out of her nappy. She picked it up, threw it into the dustbin and said “It’s dirty”. And when we discovered what had happened, Paul was so shocked he yelled out “She did a crap!!” and Maya started repeating “I did a crap, I did a crap, I did her crap” until we quickly distracted her with her favorite cartoon. So now Paul and I are ultra-careful with our language, no more cursing in the car when in traffic.

>18 Supps, 3 Rubs, 1 Shot and a Bath

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Since coming back from another appointment with our DAN doctor, we have added on more supplements to Maya’s daily intake. As of today, there are 18 supplements, 3 types of creams, 1 bath and 1 injection.
The biggest challenge is our daily struggle to get all of these important and costly supplements into her. We mix liquids into juice, open up capsules and mix to her milk, grind up tablets and dissolve in a drink, we have pretend tea parties in the bathtub trying to encourage Maya to soak in the Epsom Salts bath for up to 30 minutes and we play silly games to overcome her sensory issues with us rubbing cream on her. We sometimes chase her around with her sippy cup to make sure she finishes the dosage. We’re starting to train her to drink from a straw now, it’s still hit or miss whether she’s in the mood to drink.
Adding supplements to her milk is probably not the most recommended method according to the experts, but the experts don’t have kids who are too young to swallow tablets or capsules, with hyper sensitivity to texture and taste, and Maya has a serious dislike of syringes. She catches a glimpse of a syringe and she runs screaming from the room.
As parents, we gotta do what we gotta do. Every time she doesn’t finish her juice with the vitamins in it, I have to force myself not to calculate how many ringgit worth of vitamins just went down the drain. Every time Maya spits out a milk that tastes funny because of a new supplement, I’m mentally calculating the cost of the expensive casein-free milk and the supplement that we had to mail order from the U.S at great expense.
We learn not to add probiotics to warm milk, because the heat will destroy the good cultures. We learnt not to mix the probiotics and enzymes into the same drink, lest the enzymes `eat’ the probiotics. We know not to mix supplements with medication. And we learn that some supplements are meant to be taken on an empty stomach and some after meals. I’ve created my on checklist & journal, with every supplement Maya successfully takes, I make a tick to it. We take note of the foods she eats that day, her bowel movements, her sleep, her behavior and any new language improvements.
When starting your child on supplements, always start with a low dosage, mix it with your child’s favorite drink. If you child rejects it, try again with a lower dose or changing it to a different drink. Maybe experiment if your child would welcome taking it by syringe or from a different colored cup. Every few days increase the amount till you get to the desired dosage. Always keep a journal to keep track of any behavioral changes or bad reactions, this way you will know which treatments work for you child, which made the greatest improvements, which didn’t do anything for him and which ones your child react badly to.
There’s nothing more satisfying at the end of the day and I review Maya’s daily journal and I see a tick in every column. If she ate well at every meal that day, had a good poop, slept well last night, played chasing games with her sister and said an 8 word sentence makes me feel like I’m on the right path. Knowing that it’s been a productive day makes me feel a step closer to Maya’s recovery. It’s a good day when all the columns are ticked.