need help please

[shellgra]

My daughter is 11 and has OBPI. Hse has never had any surgeries. We did therapy for the first five years, then she was phased out. She seemed OK for a while but over the last 2 years has gotten worse. We have been to a few orthopedists which couldnt help and finally saw Dr. Nath at a clinic who advised triangletilt surgery. Wondering if it will help enoough. We are not sure where to go either. (live on long island NY). We talked about seeing Dr. Kozin who seems to accept our insurance or Dr. Price who is closer but doesnt. Any reccommendations?

Also have tons of questions for recovery (pain, how long, clothing)

Any help from someone who has a child of a similiar age would be wonderful and appreciated.

Thanks
Michelle

[Cara]

My daughter is also 11 with LOBPI. She had nerve graft surgery at 1 yr of age and Mod Quad at about age 4. We dropped out of therapy when she was about 7 and have just recently started back in with PT and OT. I am sorry I don't have any Dr. reccomendations. One of Dr. Nath' collegues did Rosalynn's surgery, but he has passed away. My daughter uses the computer quite a bit (facebook , yeah I know she is not technically old enough, but I moitor her heavily, and e-mail) If you think it would help your daughter to have someone with a similar dissablity to comunicate with Rosalynn has done BPI penpals before, but unfortunately they never wrote back. Let me know.

[shellgra]

She doesnt even realize anything is wrong,lol. She has her tricks to do what she needs to. Noone even knows she has an issue. It is me who has all the questions! I am sure she would do well with a penpal now that we are probably going to do surgery and all. She is not on facebook but would be able to do emails or plain old pen and paper:)

[claudia]

Michelle:
I am from long island also, however, I now live in south carolina. we use both drs. kozin and price.

kozin is our go-to guy. so easy to talk to, smart and easy for juliana to relate to (she is 12 now). juliana has had 4 surgeries. her last one, 3years ago was with price.

i always recommend more than one opinion anyway. we have used nath and i don't recommend him. since you are on long island, it is easy to see both kozin and price. we have also used waters, at children's hospital boston. i like him too.

ask lots of questions. almost all of the docs will answer questions via email too.

good luck,
claudia

[Cara]

If she is interested in doing a penpal e-mail me and I will give you our contact information. Pen and paper or e-mail are fine. I know some kids are more comfortable typing, some struggle with it Rosalynn does fine either way.
cara_kowal@yahoo.com