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Old 08-30-2009, 12:00 AM   #1
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crmonomo HB User
CRMO Parents

Hi!

My 8 year old daughter was recently diagnosed with CRMO.

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Old 10-07-2009, 11:45 AM   #2
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Bellarocks HB User
Re: CRMO Parents

My son was diagnosed as having CRMO in the summer of 2008. His symptoms began after he fell on a diving board on his right knee in June 2007; he was 10-years-old. Up until that point, he was a healthy, active boy. It is a l-o-n-g story as to how we came to learn of his diagnosis, and I still think my husband and I are still in disbelief.

I, too, am wondering about a CRMO support group here in the states for parents.

My son hasn't had a horrible "flare-up" until recently, resulting in pretty severe pain and absences from school, which is stressful for him and for me. All I can say to his teachers and guidance counselor is that it's like waiting for the other shoe to drop; one day he's fine and the next, he's limping because of pain in his right hip/pelvic/thigh area (his right collarbone is also affected---it's huge). There's no rhyme or reason, it seems. What do other parents of CRMO children do regarding school, absences, etc.?

A couple more questions:

- Is there anyone out there whose child has had stomach problems that were not present before his/her CRMO diagnosis?

- My son has been prescribed Meloxicam. Has anyone had good results with it?

Thanks in advance for responding!

 
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Old 12-07-2009, 05:50 AM   #3
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Re: CRMO Parents

My daughter was diagnosis when she turned 10. She was very active playing hockey and soccer. When she fell playing hockey fractured her L2 (were the hot spot weakened the bone) that when the symptoms started to become active. She has went thru multi tests and found out she has 3 hot spots. R/H leg below knee, R/H rib & on the spin. This was found from a MRI and complete body/bone scan from U of M (shadows). Had to do the biopsy to tell us it was crmo. Before the biopsy the doctors told us it was cancer and to brace for the worst. What a relief!! They prescribed Azithromycin then steroid pack (the same for asthma) 1 week dose and she improved like she was back to the same person before this. Before steroid treatment she was on strong narcotic (oxycodone) because of the sever pain (couldn't move off the sofa) really upsetting I couldn't do anything. She has been pain free for 3 months but developed a little limp in the leg that has the hot spot. Per the doc @ U of M the symptoms will respark when there is an injury don't know why that triggers the immune system to attack the bones. As for missing time in school I got a letter from my doctors stating she has a rare condition and the school must provide a home tutor or home schooling. I hope this helps. Please stay in contact there is no support groups i found yet. Looking to start a web site about this condition.

Last edited by luckytigger5; 12-07-2009 at 11:59 PM. Reason: posted contact info - please read the posting rules

 
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