my 3 1/2 year old has Crohn's (i think)
My 3 ½ year old has been diagnosed with Crohn’s. Well, not 100%, this is why I am reaching out to people in this forum. We’ve been through a lot, but I will try to stick to the highlights to keep this brief. She has been hospitalized three times over the last 4-5 months and the most consistent symptom is belly pain. She had a cat scan which shows inflammation and thickening in the small intestine. She had a colonoscopy and endoscopy and the stomach and colon look ok. The last part of the small intestine had “mild to moderate” ulcers that they biopsied. At the hospital the doctors were not able to tell me that she 100% had Crohn’s, it was always 95%. The reason why it was not 100% is because the cells in the biopsy were more acute than chronic.(I do not fully understand this) We had a follow-up appt today with her pediatric GI who is different than the pediatric GI in the hospital and he is not 100% convinced that she has Crohn’s. When asked what else it could be, he mentioned Yersinia or Clostridia, but these seemed unlikely. He was more in the area of 85%-90% chance it is Crohn’s.
He rushed us out of the office and I wasn’t able to ask questions which really upset me. He wants to reduce the prednisone she is on to zero over the next few weeks. He wants to keep her on Prevacid and start her on Pentasa and keep her on that for 3-4 months. After 3-4 months he will do another endoscopy and colonoscopy to look for the ulcers in the small intestine. At that point it sounds like he will be able to make a definitive diagnosis of Crohn’s. I asked him about SCD and he said the data was inconclusive.
I would like to do something else and wanted to find out what others think. I would like to get her off prednisone and all drugs at some point soon and put her on the SCD. After a period of time of being on the SCD, we would then start to add foods back. If we find foods that cause her belly pain we can then eliminate those foods again and continue to test that way. I want to start the SCD immediately because no matter what she has an issue with her small intestine and the diet can only help. I also feel that I’d rather solve the issue via diet vs. drugs and another colonoscopy. Doing it this way doesnt 100% confirm Crohn's but i am not convinced the doctors way will either. In 3-4 months the doctors could again have the same acute/chronic biopsy issue. At least the SCD diet way will treat her small intestine issue. If SCD solves that problem, then it doesnt really matter to me whether it is labeled Crohn's or something else.
How is my logic? Some people might be worried about giving me medical advice. No worries! I will also call back my pediatric GI and meet with a naturopath before proceeding with any plan I decide to go with.
My 3 ½ year old has been diagnosed with Crohn’s. Well, not 100%, this is why I am reaching out to people in this forum. We’ve been through a lot, but I will try to stick to the highlights to keep this brief. She has been hospitalized three times over the last 4-5 months and the most consistent symptom is belly pain. She had a cat scan which shows inflammation and thickening in the small intestine. She had a colonoscopy and endoscopy and the stomach and colon look ok. The last part of the small intestine had “mild to moderate” ulcers that they biopsied. At the hospital the doctors were not able to tell me that she 100% had Crohn’s, it was always 95%. The reason why it was not 100% is because the cells in the biopsy were more acute than chronic.(I do not fully understand this) We had a follow-up appt today with her pediatric GI who is different than the pediatric GI in the hospital and he is not 100% convinced that she has Crohn’s. When asked what else it could be, he mentioned Yersinia or Clostridia, but these seemed unlikely. He was more in the area of 85%-90% chance it is Crohn’s.
He rushed us out of the office and I wasn’t able to ask questions which really upset me. He wants to reduce the prednisone she is on to zero over the next few weeks. He wants to keep her on Prevacid and start her on Pentasa and keep her on that for 3-4 months. After 3-4 months he will do another endoscopy and colonoscopy to look for the ulcers in the small intestine. At that point it sounds like he will be able to make a definitive diagnosis of Crohn’s. I asked him about SCD and he said the data was inconclusive.
I would like to do something else and wanted to find out what others think. I would like to get her off prednisone and all drugs at some point soon and put her on the SCD. After a period of time of being on the SCD, we would then start to add foods back. If we find foods that cause her belly pain we can then eliminate those foods again and continue to test that way. I want to start the SCD immediately because no matter what she has an issue with her small intestine and the diet can only help. I also feel that I’d rather solve the issue via diet vs. drugs and another colonoscopy. Doing it this way doesnt 100% confirm Crohn's but i am not convinced the doctors way will either. In 3-4 months the doctors could again have the same acute/chronic biopsy issue. At least the SCD diet way will treat her small intestine issue. If SCD solves that problem, then it doesnt really matter to me whether it is labeled Crohn's or something else.
How is my logic? Some people might be worried about giving me medical advice. No worries! I will also call back my pediatric GI and meet with a naturopath before proceeding with any plan I decide to go with.
