United Brachial Plexus Network, Inc.

oops...didn't mention that I am mom to Jason, lobpi, 14 months.

I am wondering if your ot even is doing the correct R.O.M. exercises. And I will bet the doc probably doesnt know what bpi stands for. I agree with Claudia and Tanya completely. Go with your gut and learn all you can about bpi. Look up range of motion exercises that should be done and look at a few of the real BPI docs and they will work with ya on a plan to get you evaluated. Dont trust any Doc or PT that doesnt make you feel comfortable. I dont.

Please get a opinion from a bpi doc and just in case start gathering all your records from the hospital and doc etc.... they have a tendancy to disappear or get altered.

Thanks for all your responses everyone. I think my husband and I will push to see a BPI specialist. Right now I'm trying to find one near us (we're in Oregon--about an hour and a half south of Portland). The only one I can find on the list that's close to us is Dr Kit Song. Unfortunately I can't seem to find his name on our insurance provider list (double sigh). I'll be calling their office to see if they're part of my insurance.

Katep, I really like your idea of seeing a local orthopedic surgeon who can track when each set of her muscles come in. I never thought of that before. Also, does anyone know if the OT can do this too or is it better if an orthopedic surgeon does it? Like I mentioned before our OT felt that all her muscles were there (at least that's the impression he left me with).

And once again, if anyone knows of a specialist in Oregon please let me know--I'm still on the search!

Thanks so much everyone! You guys are great!
Lis

Lis:
I love ot and pt. I think they can work wonders for our kids. But the reality is that they ARE NOT PHYSICIANS. You need to see a doctor for your child. Don't worry about where you are or they are right now. Call, email, send videos... get in touch with two or three or four of them. I know that this is a hard road. My daughter is almost 6 years old. I am still on this road. We all are.

If you need help or want to email me privately, please do... claudia@ubpn.org.

claudia

Someone just pointed out to me that most of you travel to see your BPI specialist. I hadn't realized this yet--duh moment here I just assumed you all happened to live close enough to them (don't we all wish?).

Anyhow, this brings on another question, if you travel out-of-state (or a good driving distance) to see your BPI specialist, do you just see a local PT/OT? Or do you see the PT's and OT's at the BPI clinic too? Right now we're just going to a local children's therapy center. IF I remember right, our OT told us that he has about 4 or 5 other kids right now with this injury too--although currently our daughter is the youngest of the lot.

-Lis

bump

We see a local OT and PT, and we do aquatics with another OT, but we travel about 5 hours one way by car to see our BPI specialist (Kozin in Philadelphia).

Tanya in NY