Hi, my 10 yr old daughter was diagnosed with Crohn's Disease this past January. For the past 2 yrs I had been taking her to the doctor because she was having constant diarrhea, I was told that because she also has Apserger's that she was just nervous and needed to relax and that would make everything okay. October of 2011 she began loosing weight and we noticed blood in her stool. The doctor told us again it was due to anxiety and not to worry. I took her to a specialist in December and the PA told me she was sensitive to stress and to try a IBS diet. A few days later after reviewing the notes the specialist called to schedule a colonoscopy, he said this was not IBS and saw an urgency because of the fevers, diarrhea, weight loss, blood, and extreme pain. I was SO happy that finally someone was listening to me and understood this was not normal or IBS!
A week later she passed out and her body began shutting down because she was unable to eat anything. After a week in the hospital, a colonoscopy, and upper GI we were told she has Crohn's Disease. They sent us home with RX for Pentasa and Prednisone and said that we should see the specialist in 4 weeks. No information, no guidance, just here you go-see you later. After 3 months of Prednisone, Pentasa, antibiotics, and 3 treatments of Remicade we had no results.
We recently began seeing another specialist in OKC and feel very confident that he understand the urgency we have for our daughter. She weighs 55lbs, is so hungry but can only eat small amounts and then spends most of her days in the bathroom. She is trying an anti spasm medication for 1 week, after this week her new dr will decide if he need to rescope her. It's been 5 months of medical treatment and he is so worried about her long-term health especially since the first specialist started her on Remicade so early. We've not seen results with Remicade, but since she's started it she has to keep doing it or the fear she will become allergic to it in the future.
There are so many families out there like mine who are given this diagnosis and then sent home to deal with it. Our new specialist is very kind and explains/educates us on what we need to do, but it's still scary dealing with this every day. We are lucky enough to have a lot of people who pray for our family and are there if we need them. I've thought of making a support group for my area, even though I cannot help anyone perhaps just knowing you're not alone will help ease some of the stress.
A week later she passed out and her body began shutting down because she was unable to eat anything. After a week in the hospital, a colonoscopy, and upper GI we were told she has Crohn's Disease. They sent us home with RX for Pentasa and Prednisone and said that we should see the specialist in 4 weeks. No information, no guidance, just here you go-see you later. After 3 months of Prednisone, Pentasa, antibiotics, and 3 treatments of Remicade we had no results.
We recently began seeing another specialist in OKC and feel very confident that he understand the urgency we have for our daughter. She weighs 55lbs, is so hungry but can only eat small amounts and then spends most of her days in the bathroom. She is trying an anti spasm medication for 1 week, after this week her new dr will decide if he need to rescope her. It's been 5 months of medical treatment and he is so worried about her long-term health especially since the first specialist started her on Remicade so early. We've not seen results with Remicade, but since she's started it she has to keep doing it or the fear she will become allergic to it in the future.
There are so many families out there like mine who are given this diagnosis and then sent home to deal with it. Our new specialist is very kind and explains/educates us on what we need to do, but it's still scary dealing with this every day. We are lucky enough to have a lot of people who pray for our family and are there if we need them. I've thought of making a support group for my area, even though I cannot help anyone perhaps just knowing you're not alone will help ease some of the stress.
