>A TEST of Patience

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

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

3 thoughts on “>A TEST of Patience

  1. Hi, thanks so much for your kindly sharing! Really appreciate it! Would like to check with you about the details (e.g.: location) of the clinics/centers that you did the four mentioned tests. Thanks a lot for your time! Looking forward to hearing from you soon.

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