Re: Anyone with a child with an immunodeficiency disorder?
Alec receives enteral formula through his g-tube. I have considered doing a blended diet (whole foods blended into a liquid consistency) but I am terrified to try because his intestinal function is so poor. We just started feeding therapy 11 months ago to try and transfer him to oral feeds and his GI system has been going into a downward tail spin. I'm not entirely sure how much of it is poor intestinal function and how much of it might be an an autoimmune response (suspected inflammatory bowel disease). I am not sure he is capable of digesting real food as a large portion of his diet. A few months back he was barely able to digest his formula which is specifically designed for intestinal deficiency problems.
Alec's immunologist was the first suspect autoimmune response with his GI issues. She said those with immune deficiencies in one area can often have an over active immune response in another.
I don't worry too much about school because he isn't mainstreamed. His school is the school where the district sends the most medically complex children. They have been very good with keeping kids healthy since he isn't the only one with an immune deficiency. If he were mainstreamed though it is very likely we would have to home school. The one school he went too that did regular classes along with the ESE classes was horrible nursing wise. They knew he had an immune deficiency and kept bringing him into the nurses office with all the sick kids because the nurse wouldn't give him his meds in his classroom. It was a nightmare and he was sick all the time.