United Brachial Plexus Network, Inc.

Hi. I live in Las Vegas but I chose to have my daughter's surgery in NY. As everyone before me has said, each child heals differently. I began seeking KNOWLEDGEABLE specialists immediately, even though I did not know if Brooke needed surgery. There are many excellent pediatric brachial plexus surgeons and facilities across this country. Including in NY. I know that Dr. Price and Dr. Rick Abott are in NY (we used Dr. Abott). Also, check with your insurance ASAP to see if there are any pediatric brachial plexus specialists that they cover.

*****Please get information from doctors that specialize in Pediatric Brachial Plexus.*****

WOW! I never realized that there were so many New Yorkers on the Message Boards.

Brooksmom... I used Dr.Abbott he did the first mri I ever had of my arm. The hospital he was with is no longer there but he is in Westchester now.

I don't know of any NY groups.
It would be nice if someone formed one in a central location.

Kath/adult/robpi/NY

Kath, I'm all for a NY Group...let's mobilize the troops!!

Kath...you don't know of any NY groups??? How do you think I got to ubpn??

I ran the New York group when we were still the NY/NJ/CT group. The CT people gathered themselves up and made a group, there is a Northern NJ group and a group in Philly-the SoNJ people go there.

There used to be a really active group upstate, but I think people just got too busy.

And as for me...hmmm, I wonder what I'm up to these days? I've been asked to do more events, but it just hasn't worked out.

New Yorkers are free to email me, perhaps we can get something together.

claudia
claudia@ubpn.org

Claudia,

I've emailed you about a NY Group. Sounds good to me! Anyone else in NY interested?

Tanya in NY
Amber's Mom, ROBPI, 4 years old

Well Claudia... I just found UBPN on the internet.
I called a group in NY/NJ and I was more or less told it was for parents...
Remember, when I found UBPN I think there were only 4 adult/obpi posting on line...

There is a small group in NJ and I attended two of their annual picnics but they were not local for me.
It is a very nice group.

I tried to organize a group here in Rockland but I was already on the BOD of UBPN.
No one wanted to step up and help form the group.
I guess their kids were young and it was to overwhelming for them.

I still think we need a local support group.

I thought Long Island had a group when I first met you.
I think a support group would be good for parents and children.
One that meets once a month and not just with the doctors.
You know how great it is for the kids to see each other and compare arms...
Even the adult/obpi love to compare function and arms... LOL...

Kath adult/robpi

I'm new on this site myself, my daughter was born 11/3/06 with BPI in her left arm. For the first day and a half she had no movement, but the evening of the second day, should had minimal movement in her hand. She has been going to therapy twice a week now for the past 7 weeks, we were referred to a neurologist at CHOP (Children Hospital of Philadelphia)by my pediatrician, and I took it upon myself to contact Shriners here in Philadelphia. We met Dr Scott Kozin and his team this past Friday, they were great. Friendly, nice, and extremely informative. I haven't met or spoke with anyone that has BPI or a relative with BPI, so I felt so lost, Dr Kozin really put me at ease.

Welcome Philly, as i mentioned to Ideverna, you are way ahead of most by finding UBPN when you did. Although I have never met Dr. Kozin many people here say the same things about him as you did. It is troubling however, that there are more than a few new people on the boards in the last few months. What troubles (and saddens) me is that BPI's are continuing to happen at high rates. These kids deserve better, much better. The medical community wants to keep the status quo and pretend that they don't exist to protect their dirty little secret. Sorry if I stepped on the soap box..again, welcome!