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Crohn's Disease Forum » Parents of Kids with IBD » 5 Year old daughter w Crohns --HELP--


09-04-2010, 10:21 PM   #1
DadofCrohnsDaughter
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5 Year old daughter w Crohns --HELP--

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---
09-05-2010, 12:49 AM   #2
DustyKat
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Hi Scott,

Have responded in the Your Story forum.

Take care,
Dusty
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09-05-2010, 06:16 AM   #3
Dexky
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Hi Scott, I can't remember what I said the first time but it doesn't matter as long as you stick around. I know I mentioned my 10 yr old being dxed last Dec. He's on mercaptopurine and asacol and has had very few crohns problems since about Feb.. I very much hope you do stay!!
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09-05-2010, 06:47 AM   #4
DadofCrohnsDaughter
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No worry of that, I use a forum like this for something else and know how valuable it will/can be to me and my family.
09-05-2010, 06:54 AM   #5
Dexky
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We have a member Regular Joe who lives near you I think. I've heard him praise the Cleveland Clinic so it's good you have that resource so near. We feel lucky to be just an hour north of Vanderbilt Children's hospital.
09-06-2010, 11:31 AM   #6
amirah
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welcome to the forum im so glad you found this place, it has help me and my 16month old daughter so much, the people here and so kind, friendly and caring.
09-06-2010, 11:39 AM   #7
DadofCrohnsDaughter
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Well if anyone knows who the guy is in Cleveland area please pass my info story on

As Cleveland clinic is great, I am still a little cautious that we are jumping into imuran a little fast

But, not sure what we r doing that is right because still feel we don't have the right diagnosis, the saga continues!!
09-06-2010, 12:10 PM   #8
Dexky
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Scott, here's a link concerning the Cleveland Clinic and a few members who have had experience there. I'm sure they would be happy to tell you their experiences. Regular Joe is there as well. I think he has not been here much lately due to his own medical issues. Anyway the link is:

http://www.crohnsforum.com/showthrea...eveland+clinic

Hope that helps!! If not you can also do a search at the top of the forum page on Cleveland clinic. There are others in which it has been mentioned as well. Good luck!!
09-06-2010, 12:16 PM   #9
Crohn's 35
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Hey Dexky and Dadofcrohnsdaughter, seeing as it is labour day weekend and so many people are on holidays, back to school, and work, I am sure alot more posts will be here and Joe has be MIA because of his own issues and his wife. I am sure by Tuesday things maybe busier here and get the help he needs. Good luck.
09-06-2010, 02:23 PM   #10
momtocrohnsgirl
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Well if anyone knows who the guy is in Cleveland area please pass my info story on

As Cleveland clinic is great, I am still a little cautious that we are jumping into imuran a little fast

But, not sure what we r doing that is right because still feel we don't have the right diagnosis, the saga continues!!
hey dad...did you all have a colonoscopy? if so, they would have seen the crohn's firsthand, and there is pathology that probably did to confirm it...but only w/ a colonoscopy. if you did have one, i would be pretty confident in the diagnosis. but as someone said before, if it were simply celiac, it would cure up from a gluten free diet right away..takes about 8-12 days to see improvement.

as well, imuran has been used for over 40 yrs and altho it is by no means a mild drug or one w/out consequences, i would think that if you put her on it and you found that a gluten free diet worked wonders, then you can simply go off the imuran right away and there would not be any dire consequences. but then your covered if it isn't celiac and does not improve w/ that diet. in other words, she is getting help for either condition. i know this is hard to handle. essentially when my daughter was diagnosed, i told all my friends i had a real 'sophie's choice' to make as far as treatment went. i had to decide which way to 'hurt' her to help her. and it was agonizing for me. i went into full panic mode. but after speaking to lots of other crohn's moms...imuran really is the least hurtful. and the immune system is really the only thing it affects, which will help the ulcerations and inflammation. if you go off of it...your immune comes right back. now remicade and humira, in my opinion are the real big guns...and i'm not sure it would be my choice to start with those for a 5 yr old that you feel concerned about the diagnosis. imuran has been around a lot longer and has a longer safer history. may well be that the others end up w/ a good history, but they are still too new to have much documented data. only a decade or so.

overall i would say that i don't think they give out the crohn's diagnosis very lightly and or w/out good data that the doc has to support it. you could always go for a second/third opinion. but if there was a colonoscopy, you can be pretty sure they know what they saw and i would trust it. i know your first doc gave you the runaround, but alot of family pediatricians aren't specialized enough to know about gastro disorders. read alot around here for yourself and see how long it USUALLY takes people to get diagnosed. most people have years of suffering before someone finally pieces it together. i think cleveland clinic is an amazing institution doing some pretty special work, and i would presume you visited w/ a pediatric gastroenterolgist. they would known crohn's if they saw it, while a reg pediatrician would not necessarily. is she anemic? is her white blood cell count very high? did they test her SED rates? all those are other markers to point to the yes of crohn's. i would not hesitate on starting the imuran, because in most cases, there is a low false positive crohn's diagnosis. it is usually a false negative diagnosis. she needs the imuran to help w/ the inflammation. you can always go off at any time if you need to. but cover your bases just in case. my guess is that more than likely she really does have it. and she needs to eliminate wheat forsure.

feel free to email me directly should you have any other questions. i know this is hard. it's a VERY hard decision to decide to put your kids on lifelong drugs. i do personally know a lady who has treated her son w/ the 'patient heal thyself' system and no drugs and they have been very successful...but you are still consuming lots of unstudied supplements and it is very expensive...and you will have to change the way she eats drastically. and it doesn't work for everyone apparently. some may respond and others don't...so it is hard. keep reading and learning and the right path will become evident. we are here to help anyway we can. keep asking....
09-06-2010, 06:11 PM   #11
DadofCrohnsDaughter
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Wow, thanks forthe great info and words

It's kind of ironic we have the opposite but same screen name

Your email almost brought me to tears. I will definitely be in touch.

We are at the clinic in a ped gastro, first dr was at university and also a ped gastro but a very bad experience


I don't have a lot of time now but will respond more later on, for now thank you!!!
09-06-2010, 06:27 PM   #12
gypsigirl28
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hi dadofcrohnsdaughter, I hope things are getting better for you daughter. this is a tough time for you all. you are in my thoughts
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