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Hello wendyt18.
I read your post Nov 1st. You said in that post your 15 year old daughter was to have appointment with gastroenterologist the following week at Mayo Rochester. Can you please say if medications were suggested/prescribed or if any other treatment eg. diet was suggested at that appointment. Did your daughter see Dr J. Murray or another gastroenterologist there? What advice have you received from them.
I gave outline of treatment prescribed by my gastroenterologist in my 27/10 posting.
I hope your daughter’s symptoms are decreasing in severity.
Budesonide has helped alleviate mine. Unfortunately I have had to weigh up long term side effects of medication vs frequent pain in stomach with gastric bleeds and then transfusions.
Thank you.
Replies to "Hello wendyt18. I read your post Nov 1st. You said in that post your 15 year..."
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Hello Mindi,
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.