Hi I have posted a few questions here and my I see my daughter is now also posting. My grand daughter of five has CRMO and this is the only place I have come across others we are able to discuss the disease with. I agree wholeheartedly with Cat that we should start an online support group for children suffering with this horrible disease! I watched my grand daughter cry in pain in bed last night because she couldn't turn over in bed and this morning my daughter phoned me at 6.30am because the little one was again in tears.
There needs to be somewhere we can share what works and what doesn't in helping relieve pain with this condition and offer support to each other. I am quite happy to get in touch with any of you above to try and kick this off.
Can I also ask the lady who treated her daughter with Aleve - what it is and how young was she when she first started to use it?
I have also been told today that an electric blanket or hot water bottle at night may help as it seems to be when the muscle gets cold that pain starts.
Re pamidronate - we have now read quite a few cases of where this drug would seem to be working wonders for CRMO. We are pursuing this further with another consultant in early Oct and will certainly post to let you know what the outcome is. Our contact was made through a consultant in Liverpool Childrens hospital in UK .
If any one else has been treated with this drug we would be interested in hearing the outcome.
There needs to be somewhere we can share what works and what doesn't in helping relieve pain with this condition and offer support to each other. I am quite happy to get in touch with any of you above to try and kick this off.
Can I also ask the lady who treated her daughter with Aleve - what it is and how young was she when she first started to use it?
I have also been told today that an electric blanket or hot water bottle at night may help as it seems to be when the muscle gets cold that pain starts.
Re pamidronate - we have now read quite a few cases of where this drug would seem to be working wonders for CRMO. We are pursuing this further with another consultant in early Oct and will certainly post to let you know what the outcome is. Our contact was made through a consultant in Liverpool Childrens hospital in UK .
If any one else has been treated with this drug we would be interested in hearing the outcome.
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Hi there, I'm just posting my words of support because it sounds like you're really going through a tough time with this. I too would like to know the answer to these questions. Can anyone out thre help?
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I had to Google it to find out what it is.
At first all I came up with was chromoly steel which is what we used for dragster rails.
Eventually I found this site:
If they won't allow that on here, try Googling CRMO and you should find it.
It sure sounds nasty. What a terrible thing for a young one to have to suffer.
***edited by moderator*** web addresses not allowed
At first all I came up with was chromoly steel which is what we used for dragster rails.
Eventually I found this site:
If they won't allow that on here, try Googling CRMO and you should find it.
It sure sounds nasty. What a terrible thing for a young one to have to suffer.
***edited by moderator*** web addresses not allowed
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