Brittle bone disease / Osteogenesis imperfecta

Log in / Sign Up

List of Forums + New Post Recipe Box Usergroups Following My Posts Bookmarks

Private Messages Advanced Search Rules New User Guide FAQ Advertise Contact Us

Forum -> Children's Health

View latest: 24h 48h 72h

amother

Tue, May 16 2023, 9:54 am

Anyone have experience with a child with this condition?

lovecouches

Tue, May 16 2023, 10:19 am

I don't have experience. But there was an article about a kid with it in mishpacha junior this week. Maybe if you contact mishpacha they can give you the other kids parents contact information.

amother

Blushpink

Tue, May 16 2023, 10:25 am

I work with several kids with oi. Most are doing great and leading very typical lives just avoid high impact activities. They may get fractures here and there but doesn’t vastly limit their lives. Some get IV treatment every few months to strengthen their bones. Is there a specific question you have?

amother

Copper

Tue, May 16 2023, 6:12 pm

lovecouches wrote:

I don't have experience. But there was an article about a kid with it in mishpacha junior this week. Maybe if you contact mishpacha they can give you the other kids parents contact information.

did they state a name for it? I think it said they didnt know why - did many tests etc?

amother

Khaki

Tue, May 16 2023, 6:20 pm

amother Copper wrote:

did they state a name for it? I think it said they didnt know why - did many tests etc?

I read that article. Pretty sure it specified that she did NOT have OI.

amother

Khaki

Tue, May 16 2023, 6:22 pm

There are different types of OI. I've only ever had experience with severe OI as a nicu nurse where a baby was born with multiple fractures in various stages of healing.

amother

Copper

Tue, May 16 2023, 6:22 pm

amother Khaki wrote:

I read that article. Pretty sure it specified that she did NOT have OI.

right. thats what I seemed to remember too.

amother

Narcissus

Tue, May 16 2023, 6:22 pm

I know someone who has a baby with this. Really sweet little boy.

WitchKitty

Wed, May 17 2023, 4:09 am

https://www.amimagazine.org/20.....heim/

amother

Stoneblue

Wed, May 17 2023, 5:38 am

My 13yo son has Type 1 OI and his considered mild clinically. He has a spontaneous mutation, and it doesn't run in our family. Happy to answer any questions

amother

Copper

Wed, May 17 2023, 5:47 am

amother Stoneblue wrote:

My 13yo son has Type 1 OI and his considered mild clinically. He has a spontaneous mutation, and it doesn't run in our family. Happy to answer any questions

hope you dont mind me asking but can he pass it further though?

what were his symptoms?

from birth?

amother

Stoneblue

Wed, May 17 2023, 6:27 am

He has a 50% chance of passing it down.
He has blue sclera (which can be normal in some infants and small children), hyperflexibility, easy bruising, reflux with difficulty feeding and gaining weight, and had a couple of fractures as an infant.
A significant fracture at 3yo raised the possibility of OI, and it was confirmed clinically and via genetic testing. Subsequent bone density scan showed mild osteoporosis and he was treated with zometa for about a year.
He's followed every 6 months by metabolic bone specialist and endocrinologist. He's still on the shorter side, but no growth hormone deficiency so rec is not to supplement. He's currently back on zometa after a bad arm fracture.
He's very cautious with physical activity that could cause a fall, but does weekly swim/hydrotherapy and a special strengthening program with a trainer.
Hope this helps!

Page 1 of 1