Osteogenesis Imperfecta Support Group
Osteogenesis imperfecta is a group of genetic bone disorders. It is one of the brittle bone diseases. People with OI either have less collagen than normal or the quality is poorer than normal. As collagen is an important protein in bone structure this impairment causes those with the condition to have weak or fragile bones.
She'll be 6 months old next week. She was born with bilateral club feet and Erb's palsy (the nerves in her neck were stretched too far during delivery. She'll never have full use of her right arm, and she has 2 hours of physical therapy exercises/games every day.)
As part of her club feet treatment, her father and I have to turn her feet outward and force the top of her feet up until they touch her shins. After so many days of this, I noticed that her shins looked like they were curving at her ankles; the pattern matched where our hands held her legs for the exercises. I called her club feet doc, and his nurse said that sometimes it gives that appearance but her bones really aren't curving.
Well, I was certain that they were. So I made the Doc look at it during her last appointment. He ordered Xrays, and sure enough, her shins curved.
He's sending us to Riley's Children's Hospital. He said he suspects she has Osteogenisis Imperfecta, because bones curving like that is *not* typical of club feet. He also wants us to do genetic testing.
I've been researching, and while I feel like I can't breathe, I know it's not the end of the world. There are no fractures in the Xrays, so she most likely has a mild form if she even has it at all. But my question is this: if she does have it, can her legs be fixed? Will she ever be able to walk? It's killing me that we did this to her; our exercising of her feet did this to her. Can we fix it?
As part of her club feet treatment, her father and I have to turn her feet outward and force the top of her feet up until they touch her shins. After so many days of this, I noticed that her shins looked like they were curving at her ankles; the pattern matched where our hands held her legs for the exercises. I called her club feet doc, and his nurse said that sometimes it gives that appearance but her bones really aren't curving.
Well, I was certain that they were. So I made the Doc look at it during her last appointment. He ordered Xrays, and sure enough, her shins curved.
He's sending us to Riley's Children's Hospital. He said he suspects she has Osteogenisis Imperfecta, because bones curving like that is *not* typical of club feet. He also wants us to do genetic testing.
I've been researching, and while I feel like I can't breathe, I know it's not the end of the world. There are no fractures in the Xrays, so she most likely has a mild form if she even has it at all. But my question is this: if she does have it, can her legs be fixed? Will she ever be able to walk? It's killing me that we did this to her; our exercising of her feet did this to her. Can we fix it?
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
To answer if your daughter will ever walk, well that all depends on doctors. If she gets rods then YES she can most definitely walk some day. I read that you're forcing her feet and legs, I'm just saying that IF she has OI then you should stop that. You will break her bones! Usually treatment for clubbed feet are braces and surgery.
Are you on FB? I would like to invite you to my OI group that my friend and I have formed. It is called OI Parenting. There are a lot of seasoned moms there that can answer every single question you are wondering. Search engines have nothing compared to what we have! So please join and I will contact you via FB, it's just what we do when people request to join.
I am a mom to a two year old boy with OI type one.