>LDN, Pneumonia and Bangkok….

>We have started on LDN (Low Dose Naltrexone) a couple of months back. It is a topical cream based in Emu Oil to be applied at night. We saw Dr Jacquelyn McCandless’s presentation at an Autism Conference in Hong Kong and were highly impressed with her research and clinical experience with LDN. Please refer to Dr J. McCandless work on the benefits of LDN. You can also join her LDN Yahoo Group at  http://health.groups.yahoo.com/group/lowdosenaltrexone The use and benefits of Low Dose Naltrexone (the key word here is low-dose) are varied. Not just for Autism, but also multiple sclerosis, cancer and other autoimmune diseases. I also love Dr Kurt Woeller’s succinct explanation of LDN, very easy to understand. Please refer to http://drkurtwoeller.blogspot.com/2009/01/autism-benefits-of-low-dose-naltrexone.html

After several months of wrangling to get LDN into Malaysia (thank you RR for making this happen!) we finally got our first supply of specially compounded LDN cream. We immediately started applying it on Maya’s feet every night. Though many parents report that the smell is lovely, for us it smelt awful. My husband akin it to buffalo snort. Though how he would know what buffalo snort smells like, I have no clue. We hate the smell but love the effect.

From your own research, you’ll understand that amongst the many benefits of LDN, it also works as an opioid-blocker, which indirectly increases the production of endorphins- the happy hormone. It’s role in immune-modulation is also a big incentive for us to start on LDN fast.

Within a week, both Paul and I noticed some nice gains in Maya. She was more loving, more sociable and very sweet. Though Maya has always shown us love and affection, we saw a more loving, caring and compassionate side of Maya. She was much nicer to her sister Yasmin, she made friends very easily and was more at ease in social situations. Maya would also seek our company more, always coming over to give us hugs and kisses. She was even hugging and kissing her sister. And she started giving and receiving hugs from her own friends as well as well from close adult family friends. She showed a depth of emotion that we never realized possible. We always felt that Maya was already warm and loving. But after just 1 week of LDN, she showed a generosity of spirit that was so apparent to us.

Paul was excited to try LDN on himself too as we were very impressed with Dr McCandless herself. She is a living testament on the benefits of Biomed and LDN. For some reason, Paul was in charge of applying LDN on the girls. He also applies it on himself. Initially I would play the good wife and gave him a foot massage every night with the LDN, but that ended after a few days.

After the first week, we decided to apply LDN on Yasmin too. Yasmin has aways been more sociable and affectionate than Maya. However one of the many benefits of LDN is it’s positive effect on the immune system. As you know, immune dysfunction is a huge issue in our household right now. And yes, Yasmin too was even more loving and cuddlier than ever. Both girls got along even better than before, not only were they playing together more often, there were less fighting amongst the sisters. They were considerate to each other and even sharing toys and games.

We love the social gains and new range of positive and loving emotions that LDN brought out in Maya and Yasmin for the past few weeks. However, this also coincided with a seemingly never ending period of colds, flu, mild fever or coughing. Both the girls were either coming down with a cold or one of the other illnesses. None of the illnesses were particularly serious, they were considered mild but they would linger on longer than usual. 

As some of you know, the colds, flu, coughs and fever lingered on in our household for a few weeks. We tried many natural remedies to treat them which unfortunately did not work for us this time. It finally developed into full-blown pneumonia, both girls were diagnosed with pneumonia by our local pediatrician. It wasn’t severe enough to warrant hospitalization, thank goodness. We took our two little girls home with a prescription of antibiotics and other medications. Antibiotics when used judicially is a great, in this instance it came through for us. Within 2 days of antibiotics, we noticed a great improvement in the girls’ health.

The girls now are recovering nicely from their bout with pneumonia. Maya no longer have any symptoms though Yasmin is taking a little bit longer to regain her health.  Maya however seemed just a little bit giddy, a bit more tantrummy, she displayed slight non-compliance and anxiety.  Both girls seemed to be fighting a little bit more often. As usual, whenever the girls are on antibiotics, we started to notice some kooky yeast behavior a few days later. We quickly put Maya on Diflucan and Yasmin on Nystatin. Within HOURS of giving Maya the Diflucan, she was back to her normal, sweet loving self. She wasn’t picking fights with Yasmin and was more compliant. 

So where does LDN come into this story? Paul and I were scheduled to fly to Bangkok the next day for the Integrative Medicine for Autism Spectrum Disorder Conference in Bangkok, Thailand. Apart from the opportunity to learn more about biomedical treatments and other alternative treatments for Autism, we also took the rare opportunity to consult with Dr Jeff Bradstreet. Sometimes, the universe seems to collide in the nicest way possible…..one of our own trusted DAN doctors from Indonesia was also attending the conference. We knew that Dr RA has also worked with Dr JB several times in the past, having met him at previous DAN conferences and think-tanks. I requested for her to join us in the consult with Dr JB. 

Paul and I decided not to bring our girls along to Bangkok, we had specific issues we wanted to consult with Dr JB and we had enough test results and experience with biomed consults to make the most of this meeting. Having Dr RA there was a huge bonus, Paul and I marveled at how quickly Dr JB got to the essence of our girls with the help of Dr RA. The consults for both girls took 2 hours, which still went pretty quickly to us. Dr RA was able to answer many of Dr JB’s more in depth questions, questions which both Paul and I would be floundering with. We came back with several things to work on, getting deeper into both Maya and Yasmin’s medical issues. 

Both Maya and Yasmin presented their own unique combination of mitochondrial disorders, heavy metal toxicity and inflammation. Because of these, LDN though providing us with the lovey-dovey and sweetness benefits, also acted as an immune suppressant for my girls. Thus making the girls more susceptible to illnesses. Therefor, we now had to stop LDN with the girls, at the moment the risks far outweighs the benefits. Many other kids can benefit from LDN enormously, bringing out the happiness, good moods and social gains. Most kids will benefit from the immune-modulating benefits of LDN, however with my girls’ unique mitochondrial issues, LDN isn’t the best for us. Dr JB and Dr RA will now concentrate on  helping us with the girls immune modulation, mitochondrial issues and chelation. Since Paul and I bemoan the loss of the sweetness factor of LDN, Dr JB recommended Oxytocin instead. For now, I’m happy to be back home in KL with both my girls and am gearing up to implement the long list of things to do that we learnt in Bangkok.

>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.

>Bargain Hunters


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

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

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

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

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

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

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

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

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

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

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

>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.