November 28, 2014 at 3:06 pm #308577jmphilippParticipant
Thank you to everyone here who has helped us with ideas, thoughts, and concerns (see my other posts). In the end we opted NOT to have the AP therapy done. If the route we took hadn’t worked I would have tried it.
My son’s JIA is now in non-medicated remission and for him diet was the answer. I don’t know how long we will be enjoying this new life but for now he is completely asymptomatic. Here’s how we got there:
After reading Jenny McCarthy’s book “Healing and Preventing Autism” I saw many parallels between what my son was dealing with and her son. My son (Aidan) has always had GI issues that were never resolved and since my JIA research was at a dead end I had been reading about other childhood diseases that had become prevalent recently. His standard blood panels and scratch tests came back negative for any food or environmental allergies but I knew there was more to his GI issues. I found a specialized medical practitioner on the website listed in her book and had IgG testing done instead of the IgE tests we had done. We also had a liver biopsy and GI tract biopsy done. We walked away with a list of 26 IgG food allergies and 1 IgE allergy (dairy).
I took this list to his Pediatric GI doc and Rheumatologist was informed that these results were informative but no interventions would be done because there wasn’t enough data on these types of tests. So I eliminated ALL 26 foods from his diet. It took a couple months to figure out replacements but eventually he was set for my trial. We weened him off his Orencia (which by the was worked wonderfully via IV therapy). The other changes we have made include daily Glutathione supplementation via a cream, Vitamin D at 2000 IU (his labs are still off on this level at times), Multivitamin, and various digestive enzymes and probiotics. We shoot for non-gmo meat and foods, as much organic as we can afford, avoid breads and modern grains with casings.
He has done so well that he now is able eat hot lunch at school a couple times a week, eat pizza with friends, and live a normal life. I’ll never forget the nightmare we lived through to get here: Lypoatrophy on his arm, steroid injections gone awry, systemic infection requiring a central line, tri-annual trips to his rheumatologist 600 miles away, hospital stays, tens of thousands in doctor bills. And DIET turns out to have fixed it (for now).
Thanks again. Please get in touch with me if you need more information on what worked for us.
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