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hello
Posted: Sun May 31, 2009 4:24 pm
by Janet&joseph
hello,
I am a new user and just wanted to introduce myself.
My name is Janet (23) and I am a new single mom to a beautiful baby boy as of 9/9/08 . He does have a severe ( from what I was told) case Of EP.
He is a few days shy of 9m. Ive seen few drs but they dont really give me information. Just tell me to file a law suite or not to file. I was recently told he needs surgery asap. Any moms that have any experience with a law suite and/ or surgery at this age? any input would be great! thanks.
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Message was edited by: Janet&joseph
Re: hello
Posted: Sun May 31, 2009 10:33 pm
by DianaLB1999
It would help if I knew what state you live in so that I can give you some good suggestions...Thanks!
Diana
Madison 1 year ROBPI
Re: hello
Posted: Mon Jun 01, 2009 4:02 am
by Janet&joseph
I stay in Carson,California.
Re: hello
Posted: Mon Jun 01, 2009 2:53 pm
by ironmansmom
Unfortunately, the window for nerve reconstruction is before 1 year old. I am sorry that your child and family has to go through this, but welcome to this site. My child is 11 1/2 years old with ROBPI. We have always seen Dr Nath in Houston, but there are many other great specialists out there. You can check out the medical resources page on this site.
Good luck!!
ironmansmom
Re: hello
Posted: Mon Jun 01, 2009 8:33 pm
by DianaLB1999
Ok so time is of the essence! This is VERY important! You need to see a BPI specialist. You can check out the list of doctors on this site by state, but I would recommend that you seek multiple opinions. If you need anymore information, or anything please e-mail me at
DianaLB1999@aol.com.
Diana
Re: hello
Posted: Wed Jun 03, 2009 12:24 pm
by tkirkland
Please see a specialist as soon as possible. By six months most specialists will begin to recommend surgery (if needed). There is only a small window (and you are just about there) you really need to get in with a specialist as soon as possible. Like people before me have already said there is a list of specialists on this website. My daughter has seen Nath in Texas and Kozin in Philadelphia, PA. Both great Docs!
Re: hello
Posted: Wed Jun 03, 2009 1:06 pm
by PSMom
It is so frustrating that families still aren't getting good information about how to treat this challenge!
Please come to the San Diego Brachial Plexus Network picnic on July 12:
http://www.scbpn.org/familyevents.html
Dr. Nath from Houston will be there and gives free evaluations. You need to register at his site:
http://www.drnathclinics.com/
And you should check out his whole site. He has a ton of helpful information. You can also email him directly on his site and give him all of your son's info and he will reply amazingly quickly.
But, as others said, you will probably want to get a few opinions.
Rady Children's Hospital in San Diego also has specialists:
http://www.chsd.org/body.cfm?id=2316
It is overwhelming, but you will find amazing information and support on this site and hopefully make some California connections at the picnic.
Re: hello
Posted: Fri Jun 05, 2009 4:18 pm
by Janet&joseph
thanks ladies, I have seen a few people but I really want to go to Philly. I was referred to them by 2 doters and every where I look his name pops up. Anyone have any info on how to contact them? and any programs that would help me get there?
Re: hello
Posted: Fri Jun 05, 2009 4:56 pm
by Janet&joseph
(PSMom)
I was just looking into this and I am planing to attend. (just have to get some one to take me) Are there any meet ups in the Los Angeles area?
Message was edited by: Janet&joseph
Re: hello
Posted: Fri Jun 05, 2009 11:08 pm
by marieke
Just wanted to welcome you!
Marieke 33, LOBPI