Thank you! I requested to be added to this group. This is such a confusing disease. My daughter has now had flare ups in both arms and her shin (all in 6 months) yet my Drs keep saying that 'in most cases' it occurs in one spot, and never comes back. I wonder where they get their statistics, because I haven't seen anyone on message boards, who only had one flare up. Maybe the people who only get it once don't post online?
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Could you please tell me what dr you are seeing in Atlanta? I am in Alabama, and have been unable to find a dr that understands CRMO
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My daughter was diagnosed in March 2016. Her jaw is her worst area. Dr wants her to go on Humira. Would love to see if anyone else has a child on this. We are in GA.
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Dr. Kelly Rouster-Stevens with Egleston/Emory is really good. We also went to Iowa to see Dr Polly Fergeson who is an expert on CRMO. Just saw your post...
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My daughter has had CRMO for five years. I would be happy to discuss our children.
Grace
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I am in upstate NY. My 10yr old daughter was diagnosed with nonbacteria CRMO in her clavicle in Dec 2015. Every July she has fevers and pain that go from level 2 to 8 on and off ..somedays she has no pain and other days she is a level 10 pain the occur fast.. her fevers are only at night from 5p to 5a.. unless she gets a cold, sinus infection, etc then she has fevers during the day. An hers affects her from July to february on and off ..no one in our area is familier with idc therefore, if any parents an etc have any information on nonbacteria CRMO please contact me. . Here has not gone away and she has had it since 2015.
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Correction to my reply..my daughter has had it sing July 2015 is when her clavicle first swelled up but she was diagnosed with nonbacteria CRMO in Jan/Feb 2016. The doctors in upstate NY are not familiar with it and she gets ignored and doctors treat her like she has a virus like a cold that will go away in a few days and they dont help her very well..
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Hi,
My daughter was diagnosed just under a year ago. She has had four treatments of Pamidronate infusion ( 3 consecutive days four times in a year) and is has made very little difference to her. She can't attend school full time and struggles to walk. She is in constant pain all over her body but her feet have always been the worst: they are swollen permanently. She has another MRI in September followed by consultant appointment to see what else they can do for her.
My daughter was diagnosed just under a year ago. She has had four treatments of Pamidronate infusion ( 3 consecutive days four times in a year) and is has made very little difference to her. She can't attend school full time and struggles to walk. She is in constant pain all over her body but her feet have always been the worst: they are swollen permanently. She has another MRI in September followed by consultant appointment to see what else they can do for her.
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We did used pemidranate infusion as well for a couple month now and it’s working great no pain although my Daughter just had a repeat MRI and same regions are completely recovered but some aren’t that good yet.
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Hi I’m 15 yr old girl with CRMO and have had it for 5yrs now. I’m on methatrexate and Humeria injections which seem to be keeping the pain steady however due to exams and stress I have had flare ups with a lot of pain but I feel now I’ve just become use to the pain and can find it bearable but also it’s gotten a lot better over the past few years. Happy to talk to anyone with questions. :)
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Hello. I am an adult diagnosed with crmo. I live near New York City but am willing to travel to find a doctor who specializes in this area. Can anybody give recommendations? Thank you so much!
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Yes! I thought I was the only one! I was diagnosed at age 53. I live near New York City and have not found any Doctor Who is familiar with the proper treatment of this disease. I would love to chat with you.
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