Last Thursday, Jack was seen by his gastroenterologist and also the nutritionist that has been added to his team of doctors/therapists. Unfortunately, due to his allergy results and his medical history, EE is highly suspected. Jack will have to go under general anesthesia and have an endoscopy and biopsy the week of Thanksgiving...At the same hospital and wing where his heart surgery was (we havent been back there since). They started phase 1 treatment for the probable EE and the team has mixed ideas on if he would take the medication to treat vs going food avoidance route. Of all people, the nutritionist recommended food avoidance route (allergist thinks hes already doing this) which would mean currently hed be down to two foods. :( GI agreed due to the side effects of steroids especially in kiddos on the spectrum, but allergist felt medication would be better given his low weight (it can add weight since its a steroid) and since hes already so limited in his diet. Well have to have a meeting with the team to determine the best option for Jack should the biopsy show allergy cells. For the next 8 weeks we have to keep him on all the foods hes very allergic to outside of wheat (hes to allergic to consume it/hes been GF almost a year) so needless to say hes not feeling 100% and wont be until we can get through the endoscopy and remove the foods again from his diet.
Posted on: Tue, 16 Sep 2014 13:27:44 +0000
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