I just read this post. Wish I had seen it earlier, I apologize. So here we are 1 year later. We were not able to be seen by Dr. Joseph Murray since our daughter was under 18. 🙁 Bummer. But, we are very happy with the pediatric GI Dr. Imad Absah. He practices alongside Dr. Joseph Murray at the Rochester, MN, Mayo Clinic.
Our 17 year old daughter has been taking 6 mg Budesonide pm and 20 mg omeprazole am. We are just at the year mark for the regiment. At 6 month check and endoscopy, her symptoms were very much under control (no daily vomiting, less severe abdominal pain, etc), blood work was all in normal range (with daily supplements- iron, ferritin, and cortisol levels normal- Praise God!), but unfortunately her endoscopy showed almost no change with cobble-stoning of the stomach lining and multiple bleeding sites. Augh. So, we are at the 1 year mark and back to decision making time- medication changes, trying something besides steroids (very concerned for long term use and the implications on her health), etc. Really love for you to contact me personally- pm.