New to GI docs & Crohns
In 2005 my son was only 5. He had bronchitus and was prescribed an antibiotic. After the 10 days, he was still not well, so the doctor prescribed a more potent antibiotic. It turned his stools to water consistency and after 5 days on it we quit giving it to him. He then continued to have diarrhea for 9 months. In May 2006, our pediatrician sent us on to a children's GI doctor. They did a colonoscopy and said he had mild ulcers in lower bend in large intestine. They suspected Crohn's. They prescribed all sorts of medicines and he continued to get worse. He was starting to panic, as school was going to begin second week of August. I was certain that the medicine was causing his troubles (sulfasalazine and flagyl) so with the help of my pediatrician I weened him off the drugs while giving him a gentle Gluten Free diet. He got better. It took about a month or 2, but his stools returned to 'logs' and he wasn't cramping. I slowly added back in glutens to see if he was a celiac kid. He tolerated everything well. I didn't like the GI doctors at all, and decided they had misdiagnosed him. I never took my child back and they never called to check it either. All went great...until February of 2010. My son got sick with a virus...diarrhea returned. After 2 months of it, and my son was cramping pretty hard...I thought maybe they had been right after all. My son is smaller than most of the kids his age, and my husband and I decided to make an appointment with the GI clinic. Immediately they did blood work and his SED rate was 26 and CRP was 1.6 and they scheduled a colonoscopy. After biopsies and finding granulomas, they concluded he had Crohn's for sure. They did a small bowel follow thru and all looked great. (But by now he was on Prednisone, pentasa, azathioprine, prilosec for 6 days). His SED rate went down to 17 and CRP 0.5 after a month on prednisone his SED rate went down to 10. We were amazed how quickly he got better. Its been disaster since. He was done with pred on July 23, with SED rate still at only 11...but by Aug 30, his azathioprine was now at theraputic levels and his SED rate had climbed to 18...next month 21...next month 38. He is cramping so bad now. He keeps getting sick, or having a bacteria that needs treated with an antibiotic. We are in a viscious cycle of meds fighting each other, and all the while my little sweet 10 year old is suffering. We have another appointment tomorrow and I'm going to request we stop the azathioprine. How can this be helping him when it seems to only be letting him get sick. He's never been a child that get sick very often from school, and now he's missed that past week of class. I wish this whole Crohn's thing wasn't a scientific experiment in progress. It seems they don't really know what to do with each child because everyone responds differently to foods and meds. Our GI doctor has mentioned Remicade often lately. After only 6 months of meds, and only trying one group of them, I feel like Remicade is going to the most extreme too quickly. Does anyone else have a young child on Remicade? I'd love to hear how its going. Our Gi doc says the kids begin to grow and feel great. I'm worried she's not telling about the ones with adverse reactions or side effects. I'm just worried...its different if you are doing things to yourself...I'm in charge of my young son who is depending on me to make good decisions for him. Thanks for any advise.
In 2005 my son was only 5. He had bronchitus and was prescribed an antibiotic. After the 10 days, he was still not well, so the doctor prescribed a more potent antibiotic. It turned his stools to water consistency and after 5 days on it we quit giving it to him. He then continued to have diarrhea for 9 months. In May 2006, our pediatrician sent us on to a children's GI doctor. They did a colonoscopy and said he had mild ulcers in lower bend in large intestine. They suspected Crohn's. They prescribed all sorts of medicines and he continued to get worse. He was starting to panic, as school was going to begin second week of August. I was certain that the medicine was causing his troubles (sulfasalazine and flagyl) so with the help of my pediatrician I weened him off the drugs while giving him a gentle Gluten Free diet. He got better. It took about a month or 2, but his stools returned to 'logs' and he wasn't cramping. I slowly added back in glutens to see if he was a celiac kid. He tolerated everything well. I didn't like the GI doctors at all, and decided they had misdiagnosed him. I never took my child back and they never called to check it either. All went great...until February of 2010. My son got sick with a virus...diarrhea returned. After 2 months of it, and my son was cramping pretty hard...I thought maybe they had been right after all. My son is smaller than most of the kids his age, and my husband and I decided to make an appointment with the GI clinic. Immediately they did blood work and his SED rate was 26 and CRP was 1.6 and they scheduled a colonoscopy. After biopsies and finding granulomas, they concluded he had Crohn's for sure. They did a small bowel follow thru and all looked great. (But by now he was on Prednisone, pentasa, azathioprine, prilosec for 6 days). His SED rate went down to 17 and CRP 0.5 after a month on prednisone his SED rate went down to 10. We were amazed how quickly he got better. Its been disaster since. He was done with pred on July 23, with SED rate still at only 11...but by Aug 30, his azathioprine was now at theraputic levels and his SED rate had climbed to 18...next month 21...next month 38. He is cramping so bad now. He keeps getting sick, or having a bacteria that needs treated with an antibiotic. We are in a viscious cycle of meds fighting each other, and all the while my little sweet 10 year old is suffering. We have another appointment tomorrow and I'm going to request we stop the azathioprine. How can this be helping him when it seems to only be letting him get sick. He's never been a child that get sick very often from school, and now he's missed that past week of class. I wish this whole Crohn's thing wasn't a scientific experiment in progress. It seems they don't really know what to do with each child because everyone responds differently to foods and meds. Our GI doctor has mentioned Remicade often lately. After only 6 months of meds, and only trying one group of them, I feel like Remicade is going to the most extreme too quickly. Does anyone else have a young child on Remicade? I'd love to hear how its going. Our Gi doc says the kids begin to grow and feel great. I'm worried she's not telling about the ones with adverse reactions or side effects. I'm just worried...its different if you are doing things to yourself...I'm in charge of my young son who is depending on me to make good decisions for him. Thanks for any advise.
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