12 year old daughter recently diagnosed with Crohns Disease..

Kristy - posted on 08/22/2011 ( 3 moms have responded )

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My daughter was diagnosed 6 weeks ago with Crohns Disease. We spent 8 days in Children's with a feeding tube, steroids by IV, and are now home with alot of meds, and little progress. Trying to figure out foods she can and can not have, and back to school this week has been a challenge. Does anyone have a child with Crohns?

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Tara - posted on 05/24/2012

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Yes, my ten year old son was diagnosed recently. He started remicade and we are hoping for the best....it's getting a little better so far. I'm sending him to school but he has a medical plan with the school that he can rest at the nurses office whenever he needs...which he hasn't done yet. He gets easily tired and stressed, but the doc insists on normalcy and to send him on his so-so days. The teachers agreed to give him less homework to help his stress level too. I want to be by his side 24/7 but I know he needs a somewhat normal life when it permitts, so I swallow my lump and send him. I'm letting him take days off on his really hard days, but luckily that is not all the time. It's a bit of a rollercoaster but I hope we settle into the new normal soon!

Christi - posted on 09/03/2011

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My daughter was diagnosed two years ago when she was 8. Her case is a little different, though, because she did not have a lot of cramping and diarrhea. She had anemia and weight loss. The final piece of the puzzle was an abscess and fistula that had to be surgically drained. It was extremely, horrifyingly painful for her. We were beside ourselves because there was nothing we could do to help her. Unfortunately, we had to go through the same thing a couple of weeks ago. She is recovering now and back to school, but it has been been rough. Even though our daughters' symptoms are a bit different, I think we have helplessness in common. I want to make it better, but I can't. This is so hard. Hang in there. Everytime we havve an episode, the recovery is harder than we can imagine and it is hard to go back to school.
As far as food, we avoid wheat. That's really all we have found, except for popcorn, which our GI said to NEVER have. She sticks by that religiously.

Connie - posted on 08/30/2011

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I do not have a child with Crohn's. I have it. Finding the right foods to eat that does not set off a flare of the disease is hard. It will be more trial and error than anything else. The drugs that they will give her will help. You may not see any improvement at first because Crohn's will cause inflammation and that will take a while to heal. The only advice I can give is try to avoid spicy or greasy foods and to talk to your doctor. Counseling might not be a bad idea to help her cope with all the changes that she is going through. Do not change her diet all at once because this can irritate her stomach making the Crohn's worse. Go slow and be patient, this will take time. Give her lots of support because this is very hard for her. Also make sure that the school is aware of the special needs that your daughter will have. I wish you luck and I will keep you in my prayers.

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