United Brachial Plexus Network, Inc.

Hi every one!

We would like to know if somebody here in the message board could help me. We live in Orange County, New York. My baby is now ten months old primary was done by the seventh month and thank God we are seeing some improvements we pray and hope he should improve all of his functions.
We are getting therapy from early intervention three times a week but I feel that my therapist is rather good for general therapy, not specific for Brachial plexus Injury so if somebody could help me we will appricat it.


Solomon

I found that if I kept myself informed about BPI then my therapists were kept on their toes and were able to help me help my son a lot better.

I read about splints, taping, e-stim, all kind of therapy and kept asking them questions about if it would help my son. I brought in articles and all sorts of ideas.

What I found was most helpful to my son has been therapists who are willing to learn.

Maybe you could have your physical therapist get in contact with a therapist that specializes in PBI. Then they would know what to do and in what order to do it!
I am glad that you are seeing results from the surgery!

Alisa
Zadyn, LOBPI, 21 months old

Hi Solomon,

I agree with Kristie 100%! Our therapists are more than willing to learn, but I take the lead, rather than waiting for them to do research on their own. I figure, they see so many kids, with so many functional problems - they can't be experts on every disorder they work with. However, I can be an expert on my daughter's injury, and provide them with information, research articles and probing, specific questions.

Good luck!

mica

I live in Rockland County and if I can be of any help let me know.
I will check in Rockalnd to see who people with obpi kids are using.

I am not sure if Helen Hayes Hospital has a bpi therapy group but you could try calling and see.

Kath robpi/adult

You can e-mail me by pressing on my name or at:

KathM@ubpn.org

I am not sure if you can do this in NY, but in Indiana we were able to select therapist from the pool that serviced our area. They had a website that had profiles that listed their specialty areas. BPI was few and far between but we did find ones with knowledge of it.

Hi Solomon,
Glad to hear that your boy is doing well. My son also received therapy through EI in upstate NY, on the other side of the river. There were several times when we had to "push" the therapist, but for the most part they knew what to do for BPIs. You may want to see a therapist in Westchester that knows how to handle BPI. I believe that a good and experienced therapist is imperative and makes a big difference combined with your insight to your son's injury and history.

I can't help with therapists, but is 3 times/week typical for therapy? My daughter only gets 1 time. I know it is based on need, but I want to get an idea of what BPIs usually get. Thanks!

The way NY does it is they evaluate the child's progress every 3 months, I believe, and base approvals for therapy on those progress reports. I know for a fact that CT is not very good with this kind of stuff...our good friend that lives in CT has a child with autism and the EI program there gives him very little therapy. There is a CT BPI support group, you may want to get in touch with them and find out what they have done for their kids. Their website: http://www.ctepbpicircle.com.
Good luck.

Thanks for the info. I'll look into it!