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Child suffering from portal hypertensive gastropathy. Having severe pain. Increase prednisone dosage, frequency?

Hello Dr. Narasi, My 12 year old daughter suffers from Primary Sclerosing Cholangitis and Ulcerative Colitis . She was diagnosed when she was 3. She also developed Portal Hypertension in 2007 which resulted in a splenetic renal shunt forming in the fall of 2007. The portal hypertension decreased at that time. This fall the portal hypertension returned dramatically. She has just been listed for transplant 2 weeks ago. The portal hypertension is now causing portal hypertensive gastropathy. Last Wednesday at 4 in the morning she started throwing up blood. We took her to the er. Her GI did a ct scan , blood work, and scoped her. That is when we discovered the gastropathy. She is currently suffering horribly from the gastropathy. she is on numerous medications including: protonix , sucrafate, lialda, prednisone , poly-iron, mephyton, ursodiol, aquadeks, and refampin. Currently, we are trying to treat the gastropathy with and extra dose of protonix, an extra dose of the sucrafate, and hydrocodone. This is not working. She is currently doubled over in pain crying her eyes out. She is nearly hysterical. I ve called the transplant team and her GI, but they have not called back. I need help in knowing what else I can do to help her not hurt. Could increasing her prednisone help to decrease the pressure, inflammation, and pain she is experiencing? I ask this because in the past 5 years I believe that she has suffered from this gastropathy many times though undiagnosed. And during those times, we were required to increase her prednisone. Each time the gastropathy pain left her within hours of her increased dose. When we did not increase the prednisone the pain persisted until we did increase the prednisone although it did take longer for the prednisone to relieve the pain, usually 5 days. Have you ever heard of prednisone helping gastritis/gastropathy? Or do you have any suggestions? And at what point do I need to take her to the hospital. Just so you know. We ve been dealing with this for 10 years now. I am not an over reactive parent, and Bethany is a very tough girl. She doesn t make a fuss even if she feels awful. So, when I say that she is suffering, I truly mean it. She is in horrible pain. Thank you for your help! Taylor K.
Asked On : Tue, 11 Dec 2012
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