armymommy4

I've posted my questions in the Immune section to no avail, my daughter whom is 8 was recently diagnosed by a doctor out of Boston, mind you we reside in Texas and her real dad in Missouri, but has been quite ill since January of this year in and out of the CMH in Missouri, with several doctors overseeing her care, never one true doc handling it, she's been diagnosed with Celiac inconclusively as her biopsies came back as likely as did her antigens, she has Hashimoto's thyroiditis and now they have reversed the Celiac decision and said she has this autoimmune enteropathy called Autoimmune Inflammation of the bowel which is quite rare and not alot written on it, the only article I am aware of on it is from 15years ago by a R. Colletti and I had to ask the doctor for the actual article name, and all they can tell us is when she's healthy she'll be very healthy but when she's sick it will be just as bad if not worse than the initial times. She's been in and out of the hospital four times with durations of months, picked at, labs drawn, cut off from eating reintrod to eating and have it taken away again she went from being a healthy 75 lb 8 year old to weighing 38lbs and acting like she was a very old person in manner and abilities. She has had TPN's home health care and engy tube feedings as she couldn't obtain nourishment from regular foods, she is now on 6Mp an immunosuppressive drug and predisnose, along with her thryoid meds and lactose supplements as she cannot tolerate milk or milk by products. Is anyone familiar with this, I feel lost and alone and worried about how this all goes. Right now they have her seeing a renal specialist to do bone density tests as the prolonged steriod useage is going to mess with her bones and she may eventually need a transplant from it all. HELP anyone?