Hi everyone,
Up until now I have only used traditional approaches to Ryan's therapies (ABA, speech, OT, social skills). Ryan doesn't "seem" to have any food related allergies (ie no overt gastro issues, rashes, etc), however, hes an extremely picky eater only eating carbs (breads, cookies, fruits, etc) and dairy, and hes very particualr about brands. Ive been hesitant to try a biomedical approach because I know what an upheaval it will be, but there is also a part of me that thinks that the reason he craves this type of food could be contributing to his autism.
A friend of mine sees a DAN doctor for her son (Dr. Newbrander) and from what I understand, they put your kid on a strict gfcf diet regimen from day 1. I know there are lots of other approaches to take besides gfcf (ie B12 shots, duflocan, etc). Id like to take a more conservative appraoch but I wouldnt even know where to begin. I assume there are certain tests that can test Ryan for food allergies, yeast, etc. I dont think Ryan's pediatrician could help us. Would my first step be to meet with an allergist? What types of tests would they perform? How about a nutritionist?
I really want to use a biomedical approach only after I learn that I have no choice but to do so. I know many moms try the gfcf diet with their kids, but I only want to do it if I find out its medically necessary. Thanks.
tkny, I think my situation is similar to yours. My problem with the DAN's is what seems to me to be a shotgun approach to treatment - try this and try that because it has worked on others with no solid basis for the reason of the treatment. The DAN I was looking into wants clients to start GFCF before even getting the results of test back and also starts B-12 shots immediately again before getting test results back. I have also heard from other doctors that some of the tests run through great plains lab really don't make sense or conclusively prove anything. Thus, my son is scheduled to see a Doctor of Naturopathy (who happens to be a Friend of ours) next week. They will perform a Bioelectrical Impedance Measurement (BIM) Sensitivity Screening which can identify if my son has sensitivities, deficiencies or excessive levels of: hormones; chemicals; heavy metals, food products and food additives. this diagnostic tool also tests 14 body systems (digestive, respiratory, nervous,cardiovascular, skin...etc) to determine if these areas of the body have moved away from the norm. I'm still learning about this process. But what is so great is the ND is a friend and very trusted. the testing is non-invasive and cost under 0. The DAN would be well over 00 for initial consultation and an array of tests in which I have to send urine and still samples to some place in Kansas. Anyways I'll post in the future about how it goes.
Edit: I forgot to add that the BIM is non-evasive testing, similar to EKG's or EEG's.
From the reading I have done, the diet is considered to be the first thing required really to heal the gut otherwise the supplements are not absorbed properly.
I kicked my heels up at gf but Rileys blood test showed up gluten intolerance igG of the coeliac tests and when we took him off dairy, the improvement was remarkable so I went gf as well and have never regretted it. I supplement with digestive enzymes as well in case of mistakes www.enzymestuff.com
We did hair and urine tests for other deficiencies or overloads
Like many autistic profiles, Riley is high in copper and low in zinc so there are ways to combat this depending on the protocol adopted by the doctor. He is also high in mercury, lead, aluminium, cadmium and his viral markers are high.
So we have spent a year getting him nutritionally ready for stronger chelation than he is doing at present.
Because we are not in the states, we have paid a fortune for some tests but I believe they are necessary.
The basic nutrients to start depends on who you talk to and the needs of your child.
Children with Starving Brains by Jacquelyn McCandless is very useful for explaining all this.
I am not sure the testing available is very reliable. Honestly, the easiest way is to take him off of casein (milk products) and see what happens. If you notice a change, (usually within days) you can then remove gluten as well.
The diet is a big change but not as difficult as it seems at first.
Here is a website that helps you step-by-step:
http://www.talkaboutcuringautism.org/gfcf-diet/gfcf_diet_10_ weeks.htm