United Brachial Plexus Network, Inc. • 6 week old with bp
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6 week old with bp

Posted: Sat Apr 30, 2005 2:33 pm
by Trent's mom
My son Trent is 6 weeks old and has bp. We live in Maryland and are in need of some guidance. I had an easy delivery, I was only in labor for 3 hours and he was out in 3 pushes, which took about 10 minutes-nobody knows why this happened. Trent can move all his fingers and his sholder. There is no movement from his elbow. We have already had PT, but it is done by us at home. We saw a doctor in MD who deals in child neurology-I was not impressed and he told us he would not recommend anyone in the area for the surgery. We just don't know where to turn for the best care for him. I have already contacted Dr. Nath and am waiting for his response. The thoughts of going to TX for treatment scare me-I will if that is what is best. I just can't believe that there aren't any experts in the Baltimore/Washington/Philly area. We could use some advice this is all so new and scary!!

Re: 6 week old with bp

Posted: Sat Apr 30, 2005 4:22 pm
by admin
Hi there,

Sorry to hear Trent was injured. There is in fact a BPI specialist in Philly.....Dr. Scott Kozin and he is wonderful! I have never personally met him but I did just send him a video of my daughter's progress for the 1st time and the day he received it, he viewed it and called me to discuss his thoughts!
If you check the resources section on this site and go into the medical directory, search in the US, then by the state you would like to find a specialist.
Dr. Kozin's contact information is located there, amongst the other specialists. He works out of the Shriner's hospital in Philly.

Hope this helps.

By the way, congratulations on the birth of your baby son :)

Shellie

Re: 6 week old with bp

Posted: Sat Apr 30, 2005 5:08 pm
by admin
I am very sorry to hear about this injury! My daughter is 3 1/2 and also has a BPI. She has been through a lot, but is still such a happy little girl! :) You have come to the right place. You will learn a lot here! Congrats on your baby!!!

http://ubpn.org/medicalresources/us-bpi.html

Check out this medical directory. There certainly are more experts in the areas you mentioned! You will find them listed at the above link as well as their info about their BP team/treatments etc.
I was also very nervous thinking that I was going to have to take my baby to Texas for treatment when she was a newborn. I thought it was the only place available b/c I saw so much info on Texas and the doctors there. I was very worried. I finally found more information and realized that I had other choices and options. I found Dr Waters in Boston which is only 3-3 1/2 hours away. I was so happy when I felt comfortable with him b/c I was glad I had someone so close to home! There are many people who love Dr Kozin in Philly at Shriners. Check that out also.
Many parents love Dr Nath so that is great that you are in contact with him already. I know a lot of people who fly to see Nath, Kozin and Waters...it just depends on who you feel would be the best doctor for your child.
Best wishes to you. You are off to a great start doing all of this so early on! It will make a difference.

~Krista~

Re: 6 week old with bp

Posted: Sat Apr 30, 2005 5:15 pm
by Scottsmom
Hi Trents Mom, My son Scott has LOBPI and we have been seeing Dr. Brushart at Johns Hopkins in
Baltimore He has been wonderfull. I highly recommend him and his team. he is a peds ortho surgeon and specializes in BPI if you would like to talk more call me or email me.
My name is Donna and Scott is now 18 months old and doing great
Our number is 540 538 7228 or 301 745 4056 my email is luvdodgeracing@yahoo.com

Re: 6 week old with bp

Posted: Sat Apr 30, 2005 8:16 pm
by m&mmom
Hi Trent's Mom,
Congratulations on the birth of your baby. I'm Cindy mom to Melanie (5) and Matthew (4). Both have a right bpi injury. Melanie recovered by nine weeks. She had no movement from her shoulder to her elbow. She could move her wrist and fingers. We saw Dr. Finkel, a neurologist out of Children's Hospital of Philadelphia. Matthew's injury is categorized as severe, however thanks to surgery and alternative treatments his recovery is outstanding. He continues to see Dr. Kozin out of Shriners in Philadelphia.

Cindy

Re: 6 week old with bp

Posted: Sat Apr 30, 2005 10:20 pm
by Vancemom
We all know what you are going through. I have a 6 months old baby with LBPI. You are going to spend a lot of time researching, getting confused and getting a bunch of different info and opinion but this site is wonderful, with great people who are here to answer each other question.
One thing I can tell you now is to enjoy your baby as much as you can. These first few months go SO fast!!!!
Congradulation to you and your family....

Re: 6 week old with bp

Posted: Sun May 01, 2005 1:58 pm
by BrokenWingedAngel85
Trent's mom,

The children's hospital in Philly is supposed to be great for treating BPI. I was going to take my son Daniel (8 months old) there, but we are in Boston and there are also wonderful specialists here. In addition, there is a Ronald McDonald house in Philadelphia, which will assist you with lodging and transportation if you need it.
I know how overwhelming it can be to have to travel for treatment when your child is so young; with therapy and doctor visits, it can be pretty exhausting. But there are many resources that can help. If you really cannot travel, there may be a BPI specialist a little closer to you. I suggest asking Trent's pediatrician who he or she recommends. Good luck!

Johanna

Re: 6 week old with bp

Posted: Sun May 01, 2005 10:54 pm
by admin
Hi, Sorry to hear about your little one :-( My son is 3 months old and has been seeing Dr. Piatt (chief neurosurgery specializing in bpi's). He's at St. Christopher's Hospital in Philadelphia. We absolutely love him, and highly recommend him. Good luck. Best wishes.