United Brachial Plexus Network

Hi! I haven't been to the site in some time & came today to check out info that could be helpful for my 3 year old son. He had an operation on his wrist (tendon transfer) last year with Dr. Kozin in Philadelphia. I have read quite a bit on Dr. Nath from Texas & I know everyone likes him a lot but has anyone continued going to Dr. Kozin in Philly & how have things developed with him as far as success goes? My son had regular therapy here in Sherbrooke, AFTER his operation but once that ended, it ended. He has none now & I'm clueless what to do for him since no one sees him here except every 6 months, therapy included. They said they don't have enough therapists & he's in the better category compared to handicaps here.
I try to do therapy myself but he's an active little guy & doesn't like me doing too much with him so I've been really on my own. When I check out info on BP & see so much information I feel like I'm out in left field & very unknowledgable on what to do & if I'm missing out on doing more for my little guy & maybe I'm actually hindering his ability to progress due to my not knowing. I have met a few parents here who are frustrated with the medical help they've received & lack of therapy & have sort of given up. So, what can I do? By the way, I am in Quebec. My son is an American & Canadian. Any chance there might be something for him in Newport, Vermont, since we aren't so far from there but everywhere else is far.
If you have suggestions or info that could help, I'm a 'reading! Or if you might know of anything close by to where I am, in Sherbrooke, Quebec, Canada, or maybe you're around where I am & we could exchange info, not that I'd be much help but you never know. Thanks so much! Looking forward to hearing from you. Renee

Hi, Renee. We take our daughter to see Dr. Kozin in Philadelphia. We live in Upstate NY. She's almost 3 years old. She's had one surgery (and that was with Kozin) on her shoulder. We continue to OT, PT, and aquatic therapy through Early Intervention and privately. I understand what you mean by being an active child. Sometimes I wish I had a big piece of velcro to attach to her tush (ha, ha).

It can be very frustrating not receiving services as you feel are appropriate for your child. And the amount of information that is available each day is staggering on BPI it seems. Some of it is excellent information and some of it stinks so to speak. Keep researching. Keep coming to the forum as you can get tips here. There's a play therapy list on this website if you haven't already found it. I wish I had more to offer you.

Tanya in NY
(Amber's Mom, ROBPI, almost 3 years)

We see Dr. Kozin, and couldn't be happier with him. We've been very pleased with the one surgery he did on our son (capsule release at 13 months) and will stick with him. We saw four other specialists before we settled on Dr. Kozin.

Feel free to email me for more info.

Kate

TY for your replies! Comforted me. I will check otu the play therapy on the website as soon as I can.
With Dr. Kozin, how regularly do you see him? How often does he want to see you? Can you kids stretch out their elbows? If they can't, is there anythign new to correct or aid or help this?
Has anyone used splints to try to help the elbow stretch out?
Has anyone tried using a splint to help the arm go up higher when they can't really bend so much at the elbow?
I like Kozin too very much but I just want to know what else I can look at for my little guy.
Also, anyone else here in Quebec that gets more therapy than we do & or for free privately or anything? Please write me! How did you do it? Michael could really use a warm pool to excercise in. He loves to swim, since 3 months old but there's no where to go except hospital therapy & we can't go as he's not "in"their therapy. Although the system is free, it's frustrating.
Anything in NewPort Vermont, 45 minutes from my home in Canada. I go could there if somehow it could work. Any ideas? Thank you!
Renee

Hello,
My son has been seeing Dr. Kozin pretty reguarly. On August 2nd he had botox and cast. We just had it removed, and he must wear a splint to keep his arm extended. So far, it seems to be beneficial. We really love Dr. Kozin, and he's been great with our son. Definitely check him out!

We have been seeing Dr. Kozin for the past 1year,we think he is very a very good doctor
My son is having a Botoxinjection in 2 weeks. Can you tell me if your child had any side effects and what was his for?

They want to take my son's tricep muscle away, so his bicep has a chance to come back.

Thanks
Lisa

We also see Dr. Kozin and are quite pleased with the care and recommendations we get every visit.

We also flew out to consult with Kozin and were happy with what he had to say. We plan to continue to see him.

How far are you from Toronto? Karen Pape is there and seems to be quite knowledgable with the injury as far as therapy goes. Here is her website:

http://www.tascnetwork.net/index.asp

I wish I could have her see my son but we live in CA.

Javier has been to Dr. Kozin once, and will continue to see him. We live in South Jersey and go to Shriner's every Tuesday for therapy. I think that Shriner's, Dr. Kozin, his staff and Daniele Wilson are all great. Javier has made alot of progress working with them. His arm has made no huge changes, he has a pretty sever injury. But he, as a person, has changed alot.

MArlyn

Zavian had the same thing done to her triceps muscle and what a remarkable improvement!!! She can bend at the elbow now. And, she can even carry stuff under her arm! I was/am truly happy we decided to do Botox.