5 Year old daughter w Crohns --HELP--
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First, thank goodness I found something like this. Second I will try to be concise and avoid rambling, but I guess its best to start at some background then the beginning.
Have twin daughters, one of them is 5 1/2 years old. Never had any health problems except stools. For as long as we can remember she always had "Soft, pasty," stools--never any form or normalality (Sp??)
My wife's family has a history of Celiac, so we started thinking that. We visited the Universtity Hospitals in Cleveland and a Ped GI. Did a bunch of tests, lab work, and everything under the sun, EXCEPT the scopes. And everything essentially came back NOT indicating that she was a Celiac, upon asking him why is her stool like this, he told us that some kids just have stools like this and that she will probably out grow it. So we carried on. (BTW one of my BIGGEST regrets).
(sorry will get to Crohns stuff shortly)
2 years goes by, this spring around April, she starts vomitting occasionly, think something bad to eat, flu, virus, anything. But it continues, but with no regularity. Go back to same dip doctor and STILL tells us that he doesn't think its Celiac and will not do the scope---To say the least we went somewhere else.
Visited Cleveland Clinic, do lab work, stool samples, find out she is essentially mal-absorbing almost everything at this point and no real cause for vomitting. We get scope done pretty quickly. (sorry don't know all medical terms). But daughter has severe damage in ther bowels, mostly intestinal. But there is damage in two different areas, one where they typically see Celiac damage and the other where Crohns presents.
So we start Gluten Free diet immediately and strictly. Very tough for a five year old BTW. We do not see any improvements for almost 3 weeks. Dr, prescribes predisone at 6ml. See improvement almost in 3-4 days and within 10-14 days we saw as close to normal BM as we have ever seen. But side effects are tough, obsessiveness and bloating in face comes full force.
With improvement, we inform Dr, and they tell us to start weaning off of predisone, 1 ML a week, once we go to 4ML and eventually 3ML we essentially go back to square one. Full blown diahrea, soft stools, and 2 days of vomitting. Call Dr, and we go back to 5ML and come back in to office.
At office appt, tell us this is classic Crohns and very good chance she may NOT be a Celiac. Big questions in my mind.
They order additonal lab work, for levels to be able to prescibe Imuran. Obviously read good and bad about it everywhere I look. But curious if anyone has any history in small children???
We have heard about the diet, breaking the vicious cycle, but we had a difficult time with Gluten Free with a 5 year old, not sure how I could even get that one thru her.
So I feel I am stuck in between a rock and a hard place. Versus diet and medication, but not even sure if this is the right diagnosis. And don't feel like playing trial and error with my 5 year old.
Can anyone give me insight on the Crohns diagnosis? I know it falls under the IBD umbrella, is it all the same? or is there something else this may be?
Have heard that it is very rare for a 5 year old to be diagnosed, almost no data exists (according to my Dr) at this young of age.
I am sure I have millions of other questions, but I guess this is a good start. Any help would be greatly appreciated. There is nothing worse then a sick child and would move heaven and earth to get her feeling better.
I will look forward to discussion and try to promise not to be so wordy next time.
Thanks
Scott Kennedy
Dad of Crohns Daughter--I think---
--------------------------------------------------------------------------------
First, thank goodness I found something like this. Second I will try to be concise and avoid rambling, but I guess its best to start at some background then the beginning.
Have twin daughters, one of them is 5 1/2 years old. Never had any health problems except stools. For as long as we can remember she always had "Soft, pasty," stools--never any form or normalality (Sp??)
My wife's family has a history of Celiac, so we started thinking that. We visited the Universtity Hospitals in Cleveland and a Ped GI. Did a bunch of tests, lab work, and everything under the sun, EXCEPT the scopes. And everything essentially came back NOT indicating that she was a Celiac, upon asking him why is her stool like this, he told us that some kids just have stools like this and that she will probably out grow it. So we carried on. (BTW one of my BIGGEST regrets).
(sorry will get to Crohns stuff shortly)
2 years goes by, this spring around April, she starts vomitting occasionly, think something bad to eat, flu, virus, anything. But it continues, but with no regularity. Go back to same dip doctor and STILL tells us that he doesn't think its Celiac and will not do the scope---To say the least we went somewhere else.
Visited Cleveland Clinic, do lab work, stool samples, find out she is essentially mal-absorbing almost everything at this point and no real cause for vomitting. We get scope done pretty quickly. (sorry don't know all medical terms). But daughter has severe damage in ther bowels, mostly intestinal. But there is damage in two different areas, one where they typically see Celiac damage and the other where Crohns presents.
So we start Gluten Free diet immediately and strictly. Very tough for a five year old BTW. We do not see any improvements for almost 3 weeks. Dr, prescribes predisone at 6ml. See improvement almost in 3-4 days and within 10-14 days we saw as close to normal BM as we have ever seen. But side effects are tough, obsessiveness and bloating in face comes full force.
With improvement, we inform Dr, and they tell us to start weaning off of predisone, 1 ML a week, once we go to 4ML and eventually 3ML we essentially go back to square one. Full blown diahrea, soft stools, and 2 days of vomitting. Call Dr, and we go back to 5ML and come back in to office.
At office appt, tell us this is classic Crohns and very good chance she may NOT be a Celiac. Big questions in my mind.
They order additonal lab work, for levels to be able to prescibe Imuran. Obviously read good and bad about it everywhere I look. But curious if anyone has any history in small children???
We have heard about the diet, breaking the vicious cycle, but we had a difficult time with Gluten Free with a 5 year old, not sure how I could even get that one thru her.
So I feel I am stuck in between a rock and a hard place. Versus diet and medication, but not even sure if this is the right diagnosis. And don't feel like playing trial and error with my 5 year old.
Can anyone give me insight on the Crohns diagnosis? I know it falls under the IBD umbrella, is it all the same? or is there something else this may be?
Have heard that it is very rare for a 5 year old to be diagnosed, almost no data exists (according to my Dr) at this young of age.
I am sure I have millions of other questions, but I guess this is a good start. Any help would be greatly appreciated. There is nothing worse then a sick child and would move heaven and earth to get her feeling better.
I will look forward to discussion and try to promise not to be so wordy next time.
Thanks
Scott Kennedy
Dad of Crohns Daughter--I think---
