Dose any 1 have idiopathic osteoporosis?
i want to speake to any 1 who has this or has been treated for it my 7 year old daughter has it and it the only child at prinsess margaret hospital been seen for it there are no suport groups and the osteoprsis foundation cant help there are only 150 case of this condition reported in medical journal. can any 1 help please?
Answers:
I have not had any personal experience with this disease, but from the documentation that I've read, most children recover most of their bone tissue and although they will have to "play catch up", they will eventally resume normal growth. Its too bad you have no support groups, which is a problem in rare disorders like this. But you can join a group that is for parents of disabled children. These groups are for parents of kids with all types of disorders. It may not give you alot of information on your daughters condition, but at least you'll have the support of other people.
Also, have you discussed Osteogenesis Imperfecta with your specialist? From what I've read, they are testing for this along with your daughters condition.
Best of luck to you and your little one, and God Bless.
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