United Brachial Plexus Network

Hi Jennifer My name is MaryAnna my son is frankie he is 17 and was born with a left bpi, I don't know what state you live in but you should start looking for a bpi specialist right away don't rely on your neurologists. By finding one now and having them follow your baby from the start you will feel ...

Thanks Marieke thats what I said specially since he had the mod quad just 3 yrs ago and i don't think many personal trainers in the gyms around here are qualified to help him I sent Dr Waters an email but still haven't gotten a reply. I'm trying to get through his thick head that even though he can ...

Hi Everyone Its been a while since I've posted Frankie is now 17 and has joined the local vol fire dept he thinks this is what he might choose as a career. Frankie came to me the other day and asked if he could join a gym with some friends and start working out he wants to build muscle, he's 6 ft an...

Hi Amy

It is wonderful Congrats you should be so proud of yourself. And now a professional question Frankie now 17 wants to join a gym and do weight lifting to get bigger want is your opinion ?????? Mare

I would talk to a trust company that deals with special needs trusts they invest the money and provide you with money for what ever the child needs including a car or bike specially adapted to your childs needs.

Yes Francine that is what they would do with frankie but Dr Waters wanted to wait since Frankie is a Jr this year and its an important year with college and all and the pain is only when it pops which it doesn't happen all the time yet so he says he can live with it. Its common in bpi because the mu...

My son is 17 and has had a dislocated elbow since around the age of 9 it grew that way I have been to see Dr Nath, Dr Cornwall at phil childrens hosp Dr Kozin at shriners all said nothing could be done that it would just pop out again if they did surgery back in Sept he started complaining of a popi...

Please let your child go on the trips and go along if at all possible this way the teachers will feel more at ease, Frankie now in 11th grade has done it all from skating, and bowling to now driving and being a fireman he is also sponsored by a paintball co and plays prof paintball he has no use of ...

Hi Kath Yes I'm on the rebiff the needles are small and don't go in the muscle like the avonex but yes its 3xs a week. Please tell Suzanne I said hello its been a while since we spoke. Freezing Frankie doesn't have a problem with coats its his mother who hates them I still haven't bought one I just ...

I'm doing great finally got used to doing the shots 3 x a week for the MS and had no more problems (knock on wood) I'm also finally relaxed with Frankie driving (he's better then I am ) So all is Great hope the same for you and your family.