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Date Joined Mar 2010
Total Posts : 30
Posted 6/9/2010 3:17 AM (GMT -7)
My 2yr old has crohn's and joint problems associated with it. Anyway long story but she went on steroids for a month, it wasn't until the last week that I thought she was almost symptom free, then she stopped them (tappered off) now its been three days since she had the last dose, but the symptoms seem to be returning, not as bad as initially but I can tell they are coming back. Anyway the dr mentioned imuran a few weeks back, as I think steroids aren't very liked for pediatrics as it can effect growth. Anyway my question is if the symptoms come back does that mean she is steroid dependant or does it just mean she wasn't on them long enough to make a big difference (it took three weeks to work, and only on them for four weeks). Imuran is kind of scary so I am not sure if I should push for more steroids (even though I hate them). considering the steroids took a long time to work is it possible that she just had a good week last week and wasn't even related to the steroids? Which brings me to another question, when you have a flare up do you still get good and bad days/weeks how do you know your really in remission, or can you have short periods of remission and it come back after a week or two with a different flare?
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Date Joined Feb 2003
Total Posts : 1811
Posted 6/9/2010 6:08 AM (GMT -7)
I'm so sorry to hear that your little one is dealing with this. I was dx'd with arthritis at 2 years old, but the crohn's didn't kick in until I was 16, so I can't even imagine all that your sweet little girl must be going through. I am no expert, but since I've been on prednisone for the last 20 years (not kidding) I thought I'd weigh in on the steroids. SOMETIMES a course of steroids can be enough to knock everything into a remission of sorts or at least quiet things down. I, personally, have found that it usually takes months for that to happen, if it is going to happen at all. So, if she was only on them for 4 weeks, it was probably enough to quiet things down, but not enough to make it stop. In my experience, in times of flare/active disease steroids just won't cut it unless you take them at high enough doses for a long period of time (several months). I don't know anything about
pediatric use of imuran, so I'm sorry I can't help there.
Every flare and every remission is different for every patient. So, it is possible to have a bad day here and there when you're in a remission, but usually a flare is ongoing and *usually* (hopefully) a remission is an ongoing thing. I have found that they aren't week-at-a-time things. Is she being seen by a children's hospital? These questions you have are GREAT questions and I would put a call in to her doctor right away because this is something (s)he should discuss with you immediately.
Also, have you considered making any dietary changes? I know that's probably a joke to consider with a two year old, but I personally found a great deal of success (remission) by using the Specific Carbohydrate Diet. Children can eat the foods and you might find that it helps her. I know it has worked for a lot of people, so I just thought I'd throw that out there for whatever it's worth since it's a non-chemical way to help. I hope you find whatever can help her! I'll be keeping her in my thoughts.
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Date Joined Apr 2005
Total Posts : 14995
Posted 6/9/2010 8:02 AM (GMT -7)
Just fyi for about
a week after I get off the Pred I have more joint pain everytime. It does get better, I would watch and see if it doesn't get better within a few more days. If not, then the Imuran might be a good idea. Many have had great success with these meds, getting their Crohns back into remission. Good luck!
Co-Moderator for Crohns Disease
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith"*
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