United Brachial Plexus Network, Inc.

My 6 mo. old son went to his first PT visit after seeing the neurologist about two weeks ago. My oldest son has Erb's Palsy(ROBI), so I'm very concerned about this one too. Both the neuro. and the PT seem to think that all I have to do is the ROM exercises and everything will be honky-dorey. All the PT wanted to do was give me two ROM pamphlets. I'm so upset that I drove a long distance, paid my co-payment, and all she wanted to give me was ROM info. which I had already retrieved from the internet. Aren't these exercises suppposed to be done under the guidance of a therapist?

To make a long story short, how do I go about getting actual therapy for my 6 mos. old son? I'm still trying to get my oldest son seen by the BPI specialist.
My ins. co. is trying to maneuver out of giving my children any treatment. Does anyone have any suggestions or advice?

For the first three years of Michaels life he had a therapist who was NDT certified. This means that this therapist had to have extra training in nerve development. The ped. neurologist at the time insisted he see someone who was NDT certified because he believes a lot of injuries can be caused by a therapist who doesn't know what they are doing with young babies and nerve damage.

I hope you have better luck looking for someone who knows what they are doing. They are out there. Maybe ask your insurance company if they offer someone with these cridentials. Good luck.

You may want to try calling the Department of developemental disabilities. I think it is a federal program. They came to my house and helped us a lot. Here they work out of the same office as the child protective services and drive the same cars etc... I had a few nosey neighbors(assuming they were there because of abuse) I had to put them(neighbors) in their place but DDD was great for us.
Where do you live? I hope you saw a specialist in BPI's because unfortunately most doctors take a wait and see attitude when the nerve graft surgery has to be done before about 9 months I think. It is o.k to get 2nd opinions...it is your right.
Good luck to you.
T.

check your health department for EIP early intervention program. keep working on it- yes, youre right aboput therapy being more than ROMing,
happy ROMing, mary

I agree with Mary, check into an EIP program. You can also call around to therapists in your area to see if anyone has experience with BPI. We have found that in many cases people are willing to help even if your insurance may not cover services. We have gotten a couple of reduced rates for various treatments from time to time. Good luck.
There are a few bpi clinics that will take a video tape eval and let you know what they think at no charge.
Cindy