francine

[Anna]

I think my reply under "unusual recovery?" got buried, but you had asked what area we are in so you could recommend a specialist if there was one in my area. I asked if you meant doctor or therapist - the PT we found specializes in BPI. I would be interested if there was an M.D. close as well - we live in the Melbourne, FL area (just south of Cape Canaveral where they launch the shuttle) - thanx for the help, just in case we do need it. It seems to be becoming more of a strength issue than a range of motion issue, but she still does not do much shoulder flexion and is compensating in all sorts of ways like rotating her trunk or pushing her shoulder forward to reach a toy. The other motions seem to be coming back well, which I know we are blessed for this, and I hope it's just a matter of time and therapy for the rest. Thank you!

[Kristie]

I know you posted to Francine but I thought it would be ok to speak up to...
There is a Dr. Grossman in Miami. That might not be super close but it might not be bad to check him out.
Here is a link to his web site:
http://www.handandnervespecialist.com/

I don't personally go to him but I have run into others who do and I haven't heard any complaints.

Hope this helps
Blessings,
Kristie

[francine]

so did you find Leslie McKibben , PT? She's the PT down there who specializes in BPI and also runs the Melbourne support group (and she is also a TES/ESTIM teacher!) Wondering if that is who your therapist is. Leslie can most certainly point you in a direction of doctors who her patients have used and been happy with - Leslie sees the results so she would have first hand knowledge. Just in case she is not your therapist - here's her email address lmpt@worldnet.att.net.

Good luck and keep us updated ok?
-francine

[Anna]

yes thanks Kristie!

Francine, yes - Leslie is going to be our therapist (haven't gotten scheduled yet because she was out of town - I think she went to TCH) But we did do a clinic screening eval w/ her. I had met her years ago (I'm a ped. OT), so I knew who to check into in this town.

I got Lexie to look to her right while on her tummy fo the first time tonight! You could tell it was really hard for her, but she finally did it!

[muzik2407]

Hi, I live in Florida and my daughter's primary was with Grossman. He has his main office in Miami and comes to a West Palm Beach office. His toll free number is 800 668 2778. His patients are both adults and children. We are happy with him and his staff. I wish you the best.

[francine]

Well with leslie on board your sweetypie is in great hands! Congratulations on the new movement....little miracles are the beginning to BIG miracles! Just wait...you'll see!

-francine

[browning93]

We go to Leslie ,too for e-stim. We live in Orlando. There's 2 doctors in Orlando who folow BPI and do surgeries. One who is highly recommended is Dr. Jose Barerro. The one who did Michaela's intercostal nerve grafts at 11 months old was Dr. Joann Werntz. She couldn't have done a better job. Michaela had neuromas on C5 and C6, C8, T1, and T2 were avulsed. Her arm and hand was like a cooked piece of spaghetti. She got normal index finger function, a grasp, all kinds of arm movement almost normal, functional, except for the shoulder. She took T3,T5,and T6 and grafted them into the ulnar nerve. Then since T4 was the longest she grafted it into the median nerve. She did all this and didn't have to touch the sural nerve in her leg. At the time she said she was trying to save the sural nerve for future nerve grafts if needed,but doesn't look like we will. The e-stim Leslie started us on also helped alot to regenerate the nerves. I know Leslie can recommend someone also. She's easy to talk to. LeeAnne