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osteogenesis imperfecta

Support for Mothers and Fathers who have children with Special needs
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osteogenesis imperfecta

Postby mrs doll » Fri Apr 30, 2022 10:25 pm

hi everyone my dd has just been diagnosed with osteogenesis imperfecta i was wondering if there is anyone else out there who has or has a child with O.I.
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Re: osteogenesis imperfecta

Postby woc » Sat May 01, 2022 11:18 am

Mrs Doll,
Sorry to hear your daughter was diagnosed with that. What does it mean for her, is it a rare condition? My daughter has arthrogryposis which is quite a rare condition but I find it really helpful to talk to others who are familiar with it. Its amazing the amount of information and support groups that are out there when you go looking.
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Re: osteogenesis imperfecta

Postby babyforme » Tue Aug 17, 2022 2:51 pm

Sorry to hear that it must be a shock at the moment, how are you coping? I have just read a book about this lately, what type has she got?
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Re: osteogenesis imperfecta

Postby mrs doll » Tue Sep 21, 2022 8:05 pm

hi sorry about the huge huge delay in getting back to you im having loads of trouble getting into some discussion topics since they changed the site around.

we knew dd had a 50-50 chance of having oi as my dh also has it so we were prepared for it, but when you look around the baby ward in the hospitals you realise that even though she is going to have a lot of pain in her life her bones will heal and we can bring her home some of the babies are so sick up there. dd has type one but they are saying she has the more severe type of type1. she has had three fractures in the last four months she is getting a cast off in the morning so hopefully she will start walking before her next break. we have started biohosphonates treatment in crumlin hopefully in time this will help her.
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