my daughter
My daughter, Hannah, was diagnosed at the age of 8, showing symptoms beginning at age 6. She is 15 now. Its been a long road. She has tried nearly every medication and had potentially life threatening reactions to two (azathioprine caused severe neutropenia; remicade caused an anaphylactic type reaction). She had a bowel (mostly SI including ileum and top of LI) resection in 2009. In 2010 she spent three months on a semi-elemental diet. The only real success we have experienced over time has been to control her symptoms with diet. She appears to have trouble with large protein molecules. We knew about beef and dairy for years. Last year when the liquid diet started making her sick (go figure - it was full of dairy) we tried a gluten free diet and found it worked wonders with how she felt, but also with growth. She has been tested for Celiacs twice and it was negative, but we believe she may have a gluten intolerance. Hannah always flares in the late fall/winter and rebounds come late spring/summer. She has been on Humira and then Cimzia the past eight months. With her winter flare, her doc added methotrexate to the Cimizia, but it made her too pukey so we discontinued it. He wants to switch to azathioprine now, but we are balking due to her reaction to it when she was younger and the increased risks of pairing it with Cimzia. Going back to the gluten free diet (we discontinued it with the methotrexate) and trying to hold steady for a while. We shall see. All meds tried over the years: azathioprine, budesonide (Entocort), prednisone, asacol/pentasa, Flagyl, 6-MP, Remicade, Humira, Cimzia, methotrexate and several combinations of these. I am always open to new ideas/suggestions for meds, diet, etc. Just want to see my girl suffer less and be able to live as normal a life as possible. She is an amazingly strong and sweet young woman.
My daughter, Hannah, was diagnosed at the age of 8, showing symptoms beginning at age 6. She is 15 now. Its been a long road. She has tried nearly every medication and had potentially life threatening reactions to two (azathioprine caused severe neutropenia; remicade caused an anaphylactic type reaction). She had a bowel (mostly SI including ileum and top of LI) resection in 2009. In 2010 she spent three months on a semi-elemental diet. The only real success we have experienced over time has been to control her symptoms with diet. She appears to have trouble with large protein molecules. We knew about beef and dairy for years. Last year when the liquid diet started making her sick (go figure - it was full of dairy) we tried a gluten free diet and found it worked wonders with how she felt, but also with growth. She has been tested for Celiacs twice and it was negative, but we believe she may have a gluten intolerance. Hannah always flares in the late fall/winter and rebounds come late spring/summer. She has been on Humira and then Cimzia the past eight months. With her winter flare, her doc added methotrexate to the Cimizia, but it made her too pukey so we discontinued it. He wants to switch to azathioprine now, but we are balking due to her reaction to it when she was younger and the increased risks of pairing it with Cimzia. Going back to the gluten free diet (we discontinued it with the methotrexate) and trying to hold steady for a while. We shall see. All meds tried over the years: azathioprine, budesonide (Entocort), prednisone, asacol/pentasa, Flagyl, 6-MP, Remicade, Humira, Cimzia, methotrexate and several combinations of these. I am always open to new ideas/suggestions for meds, diet, etc. Just want to see my girl suffer less and be able to live as normal a life as possible. She is an amazingly strong and sweet young woman.
. Man these kids are resilient aren't they?