CarolinAlaska
Holding It Together
Hi. I'm mom to J, who is 13 and just diagnosed with Crohn's.
She has had issues since infancy - diagnosed with failure to thrive in childhood and never really became healthy since. Never had a colonoscopy until last month although they did do a workup then and said she "was a petite girl with big parents". In her early childhood she had chronic diarrhea and abdominal pain after meals - had her bent over a chair during meals holding her stomach. At age 4 she developed seizures (I think now may have been result of malnutrition). Seizure meds were a nightmare (another story). I found that gluten-insensitivity could cause seizures at about age 6 so we went on a gluten free diet. This was a miracle for us as she stopped having so much abdominal pain and diarrhea. (Her celiac tests were always negative). She's always sat at about the 5th % for weight since she dropped from 50th % at birth in infancy. Gluten free diet didn't do everything, but helped so much and has off and on gotten us off the seizure meds which make her GI problems worse. Currently she's been seizure free since 2010 and off meds since last August.
Last April I noticed that she was not going into puberty at all and took her to a peds endocrinologist again (she saw one in infancy for her failure to thrive). She did a workup for her and found that she was pubertally delayed and growth delayed and less than 1 % for weight and height had dropped to less 25th % (had been 50 % for many years). I told her J's story and she gave her 6 months to grow. No changes in that time, but I told her in followup that I thought it had to do with J's GI problems. She asked about joint problems, and at that time she had been complaining of knee pain and other joint problems. She got a sed rate and found it to be high. She immediately thought of Crohn's/IBD and sent her to peds GI.
In December we saw the peds GI doc and had colonoscopy, MR endoscopy, upper endoscopy and 9 days later capsule endoscopy. (That's a lot of prep in a 10 day period to be sure!). The endoscopies showed one small area of her colon that was inflamed. She took 17 biopsies throughout her GI tract (but couldn't see in small bowel) and only that one small area showed anything abnormal (inflammation possibly due to bacterial infection or early Crohn's). 9 days later the capsule endoscopy showed ulcers throughout her colon and inflammation throughout her small bowel. GI doc thinks it is Crohn's and wants to start her on prednisone.
My biggest concern is that J's main problem is not diarrhea or pain for the most part but lack of appetite and failure to gain weight. Fortunately, she is now finally starting puberty. Over the past month while waiting for results we have been pushing Ensure (2-3 cans a day) and going with a completely gluten-free diet. For the past 3-4 days she has been pain free, diarrhea free and this month has gained 2 lbs (as well as started puberty). She is only 70 lbs. I don't know about prednisone followed by these heavy duty meds. Is it really necessary? Isn't the treatment worse than the disease in her case? I think I am leaning toward asking the GI doc if we can try to continue the diet and Ensure for awhile to see how she does, or go on total enteral nutrition as an alternative. I think at one point she was open to this.
Does anyone have a story of a child similar to ours that doesn't have severe Crohn's, no bloody diarrhea, pain controlled with diet and Ensure or similar, who did well without the big gun meds? I really need some support, and really appreciate the support I've seen for others who have posted.
Thanks,
Carol:sign0085:
She has had issues since infancy - diagnosed with failure to thrive in childhood and never really became healthy since. Never had a colonoscopy until last month although they did do a workup then and said she "was a petite girl with big parents". In her early childhood she had chronic diarrhea and abdominal pain after meals - had her bent over a chair during meals holding her stomach. At age 4 she developed seizures (I think now may have been result of malnutrition). Seizure meds were a nightmare (another story). I found that gluten-insensitivity could cause seizures at about age 6 so we went on a gluten free diet. This was a miracle for us as she stopped having so much abdominal pain and diarrhea. (Her celiac tests were always negative). She's always sat at about the 5th % for weight since she dropped from 50th % at birth in infancy. Gluten free diet didn't do everything, but helped so much and has off and on gotten us off the seizure meds which make her GI problems worse. Currently she's been seizure free since 2010 and off meds since last August.
Last April I noticed that she was not going into puberty at all and took her to a peds endocrinologist again (she saw one in infancy for her failure to thrive). She did a workup for her and found that she was pubertally delayed and growth delayed and less than 1 % for weight and height had dropped to less 25th % (had been 50 % for many years). I told her J's story and she gave her 6 months to grow. No changes in that time, but I told her in followup that I thought it had to do with J's GI problems. She asked about joint problems, and at that time she had been complaining of knee pain and other joint problems. She got a sed rate and found it to be high. She immediately thought of Crohn's/IBD and sent her to peds GI.
In December we saw the peds GI doc and had colonoscopy, MR endoscopy, upper endoscopy and 9 days later capsule endoscopy. (That's a lot of prep in a 10 day period to be sure!). The endoscopies showed one small area of her colon that was inflamed. She took 17 biopsies throughout her GI tract (but couldn't see in small bowel) and only that one small area showed anything abnormal (inflammation possibly due to bacterial infection or early Crohn's). 9 days later the capsule endoscopy showed ulcers throughout her colon and inflammation throughout her small bowel. GI doc thinks it is Crohn's and wants to start her on prednisone.
My biggest concern is that J's main problem is not diarrhea or pain for the most part but lack of appetite and failure to gain weight. Fortunately, she is now finally starting puberty. Over the past month while waiting for results we have been pushing Ensure (2-3 cans a day) and going with a completely gluten-free diet. For the past 3-4 days she has been pain free, diarrhea free and this month has gained 2 lbs (as well as started puberty). She is only 70 lbs. I don't know about prednisone followed by these heavy duty meds. Is it really necessary? Isn't the treatment worse than the disease in her case? I think I am leaning toward asking the GI doc if we can try to continue the diet and Ensure for awhile to see how she does, or go on total enteral nutrition as an alternative. I think at one point she was open to this.
Does anyone have a story of a child similar to ours that doesn't have severe Crohn's, no bloody diarrhea, pain controlled with diet and Ensure or similar, who did well without the big gun meds? I really need some support, and really appreciate the support I've seen for others who have posted.
Thanks,
Carol:sign0085: