United Brachial Plexus Network, Inc.

My son had an accident on a fourwheeler when he was 13, he is now 20. The injury has improved from the initial accident with 3 years of OT.But he still has limited movement of his arm,he can't cock his wrist "up" and his finger extensors don't work, his wrist is bent down and his tendons are over stretched.He has limited lift of his arm..only about a 1/4 of the way up. His arm is slightly smaller that the other. He doesn't have insurance to cover anymore OT. I would like to know if there are any options for him..Deb

Hi Deb - I guess I will be in the same boat with my daughter once she hits 18.

The therapists get paid very little from the insurance companies compared to what they charge - is there any way for you to negotiate this type of rate for your son's therapy if you have to pay out of pocket?

Also - since he's not a young one anymore - can they give him a plan of action - teach him certain activities/exercises/modalities to do and then just come in once a quarter to get reassessed and a new list of what to do? Maybe they can give you some ideas of what types of equipment / therapy tools you can buy for your home so he can do a home program?

Maia has OT twice a week but we also have a home program going on which she does everyday. We have about 3 dozen tools and even more activities that I choose from daily to do with her. But just normal daily things are very helpful - like for example, maybe you son will like to learn how to bake bread?

There is a great list in the Awareness section online http://ubpn.org/awareness - resource section - "Stretching the Limits" - that will give you a lot of ideas that you can adapt for an adult.

We learned at a seminar recently that most important for good therapy is a warm up and stretching before you do anything - and stretching afterward as well.

There is also a great book out there which gives specific exercises for carpal tunnel - it's a very easy book to follow... here's the link at Amazon.com
http://www.amazon.com/exec/obidos/tg/de ... ce&s=books

Hope this has given you some hope beyond therapy.

-francine

Deb - one thing I neglected to tell you is that maybe a bpi specialist can help your son gain more range of motion? Where do you live? Look at the Medical Resources section (on the home page of this site) and maybe there is a specialist in your area?

Are you in NY or close by, by chance? Because this coming weekend, Dr. Nath will be in Long Island and this would be a good opportunity for your son to be evaluated. Here's the link to the event: http://www.injurednewborn.com/tristatemuseum1.html

BTW - If your son does have surgery at any point- then he will be able to get OT again because each surgery is a new diagnosis and he will be required to have rehab therapy.

-francine

Hi Francine... I thank you for your time in your response to my letter.It has been a while since I checked this site to see if anyone responded. I live in Wisconsin,we do have the University of Wisconsin, in Madison to go to if we need anything like the surgery. Needless to say my son doesn't like the idea of doing that. I think you are talking about tendon transfer...right? He says he is sure that all his muscles are working , it's just that they are so atrophied from such a long dormancy. He does have fairly good use of his arm. He works right now cleaning the hoods and duct work for restaurants. And he is planning on going to school this next fall at MMI in Fla. Thank goodness he qualified for a program that the state has for people who are in his situation,
they help with the funding for the schooling. Otherwise I don't think he would be able to go and do this.But I will check into the deal you are talking about with the OT. Maybe they will cut a different deal for people who pay cash. Instead of going through the insurance. You seem very educated on this subject. Did your daughter get this from an accident or is it a birth related injury?..Sometimes I wish I had someone to talk to this about..because if you don't have a child that has had this horrible type of thing happen to them , then it's hard for people to understand just how helpless a parent feels.I hear things like "I'm sure he'll do fine in life"...but I don't think they can imagine what it feels like to loose the use of a limb..or even parcial use of one. And it really makes me sick that the SSI doesn't view someone without the use of an arm as diabled. It's not that I want my son to get a free ride...but it will be alot harder for him to make a decent living over the long haul..and some suppliment would help..if only for a while. Well thanks for the advice..and a chance for me to vent. sincerely , Deb

Deb - about the atrophy....

how about electrical stimulation?

since you aren't on the boards a lot - email me ok and we can talk more....

francine@injurednewborn.com

-francine