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Crohn's Disease Forum

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  1. C

    Low vitamin D!! I think my daughter has Rickets!!!

    I'm very glad it's OK. Hey, we'll take every not-too-bad test result as a victory. Wish I could send you some of our sun. We've been broiling in 100 degree heat for a couple of weeks, but today is nice.
  2. C

    Moody and Emotional Pre-teen

    P.S. My son's been on Remicade for 7 years. He used to be very sleepy that day because he takes Benedryl beforehand. Now that he's bigger, the Benedryl doesn't affect him. I haven't heard that the Remicade itself makes you tired.
  3. C

    Moody and Emotional Pre-teen

    That's a tough one, lad. I worry the same way about my son with Crohn's. Then I stop myself and remember how his brother was at the same age. The older one was sad, worn out, and cried a lot in middle school. Long story short, he graduated from college this spring and is an amazing and...
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    Prednisone question

    Very good point, DustyKat. Prednisone can cause serious errors in judgment too. I refused it after I realized I was driving through red lights with my kids in the car. The brain just doesn't engage with the will. I won't allow my son to be on long-term prednisone so I don't have to deal with a...
  5. C

    Low vitamin D!! I think my daughter has Rickets!!!

    Runninglady, don't panic yet! Rickets are probably not in the picture at all. Your daughter's symptoms probably are related to nasty prednisone and/or IBD itself. In the past few years there have been a lot of findings about vit D and Crohns. Many Crohn's patients have vit D deficiency and...
  6. C

    Prednisone question

    When I'm on high-dose steroids I can clean the whole house, keep up with work, and drive everyone nuts with non-stop talking. It's like that time in your 3rd trimester they call the "nesting" phase when suddenly you can do up a whole nursery in a week, right before you sit down and decide to not...
  7. C

    Top pediatric GI centers in the US

    Look at the centers that participate in ImproveCareNow, a quality improvement collaborative for pediatric IBD. There's another thread about it. The ImproveCareNow centers have a strong focus on pediatric IBD. If you contact a center, you might want to ask for a doctor that's particularly...
  8. C

    How will they cope with many years of Crohn's?

    I became ill at 24 and now I'm 52. All they had then were steroids, flagyl, and some 5-ASA compounds. After 15 years of very serious illness I had a permanent ileostomy. I've been in remission ever since. Before my ileostomy, Crohn's controlled my life and the suffering was unbearable. The...
  9. C

    Too soon for Remicade?

    The top-down approach is supported by studies in the past couple of years and is being used increasingly. If you search on "top down crohn's disease" you should find some credible sources. The reasoning is consistent with this quote from David Rubin, MD, associate professor of medicine...
  10. C

    Improve care now

    The "Circle" newsletter from ImproveCareNow just came out today. I can't post a URL because I'm a new member, but here are instructions: 1) Go to the improvecarenow web site (it's a .org) 2) Click on the "News" link 3) At the right side of the page you'll see links to all issues. Today's issue...
  11. C

    Improve care now

    Hello, everyone. If you can possibly get your child to an ImproveCareNow site, I hope you will. While participation is at the site level (i.e. all docs at the site participate), some docs participate more than others. You might want to ask about that if you contact them. My Crohn's disease was...
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