Questions about Recovery?

[Lenni]

Hi all, I have not been posting much latley, been pondering Ashley and her shoulder. She has ROPBI and has not had any surgeries. First I will describe her shoulder/arm. Ashley can lift her arm out infront of her body and up to her shoulder, she can barley grasp the waist band of her pants, cannot put her hand on her hip, cannot straighten her arm, contracture of elbow, cannot put her arm out to the side to either leave straight or pull towards her shoulder. She has winging of her left shoulder, and a slight winging of the right. She can supinate, not perfectly but OK, she has decreased sensation of her right hand and two of her fingers stay together at all times.

My questions are, what kind of recovery do you expect for your child, can you desribe to me some of their movments, does Ashley sound like a child who is doing well? I am just wondering if I should be pursuing other doctors, therapists, ect... At one time Botox injections were suggested, but we did not follow through.

Thanks everyone, I look forward to hearing from you.

Lenni

[francine]

Lenni - I know that you are searching for the right answers on what to do for your daughter and my heart goes out to you.

From reading your post, I can gather that she has some contractures in the shoulder (or she would be able to raise her arm straight up) and in the elbow. About the winging well that might be a good thing, meaning that it might show that she is not dislocated but also people are having good results with kinesiotaping, and about the two fingers I'm cluesless.

The shoulder contractures could turn into something more serious like scoliosis later on. The elbow contracture - well that can get worse and really change whatever function she currently has. So maybe you want to look at this from a future standpoint? If we don't intervene at this time, what will the future hold...what will get better, what will get worse, what secondary issues will arise, what function will be gained or lost.

You know what I always say - get to a bpi specialist - and maybe you want to get a couple of different opinions, too.

I wish the best for Ashley,
francine

[Lenni]

Thank you Francine, I'll see what I can do. The sad thing is that Ashley does not have a BPI specialist. She does have a neurologist though, I'll get an appointment with her and go from there.

I am very dissapointed, now that I have had time to think about things, that there have been no other options for Ashley from the Doctors. I do believe we are behind the times here in Canada, BC especially! Anyway, I shall try to be positive and not feel sorry for Ashley.

Thank you very much for the info.

Lenni

[Carole]

You could always send a video tape to TCH this is a free service and see what they say. Then you could use this info to search out better PT/OT and possibly share it with your doctors. Good Luck in your search. My child has good range and no contractures but will still need therapy all her life for winging and weaknesses. A good BPI specialist will catch things that crop up- so will a good therapist. I also think Dr. Waters in Boston is wonderful.

[francine]

Lenni - I am so bad with American geography nevermind Canadian geography...so i don't know where you live. BUT how about the hospital in Toronto that people take their kids to.... Sick Kids I think it's called or something like that. Don't they have a bpi specialist there? We used to hear about it a lot at one point.

About the video to TCH - the address to send it in is http://www.injurednewborn.com/maia/video.html

-francine