Overwhelmed and Scared

[PamS]

Hello, this is my first time here. I have a 3 1/2 month old son with bpi to left arm. 2nd visit to pediatric neuro and he thinks there is some improvement but not alot. So we are looking into surgical evaluation.

I have found TCH, wondering if anyone knows about other places that perform the surgery. TCH sounds wonderful, should I bother with anyone else?

Timing is so important did anyone have a hard time getting into TCH? How long did the process take?

I have a million questions, but will stop here for now. Thanks for any info. Pam

[admin]

I am so sorry that you are having to go through this. I hope you and your little angel are doing ok. Where do you live? I live in florida and went to Dr. Grossman in Miami. He is wonderful. Sabrina also has a left bpi and had surgery last November and to see what she is doing in just a year is amazing. Feel free to email me if you have any questions.
Dana

[admin]

Most of the people on the board have gone to TCH and will tell you a lot of wonderful things about it, so I will leave that to them.
TCH was not an option for us because of the distance and insurance restrictions. My daughter is almost 13 mos. She had surgery at St. Louis Children's hosptial last month. We have been very pleased with the quality of care recieved. They have been super in communicating with us and helping us to get needed test done locally (we live in Indiana). I have started a webpage about Rosalynn and have a link to there site on it. it can be accessed at:
http://www.tr.k12.in.us/trh01/hutchinc/bpi.htm
Feel free to e-mail me if you have any questions.

[Cara]

Most of the people on the board have gone to TCH and will tell you a lot of wonderful things about it, so I will leave that to them.
TCH was not an option for us because of the distance and insurance restrictions. My daughter is almost 13 mos. She had surgery at St. Louis Children's hosptial last month. We have been very pleased with the quality of care recieved. They have been super in communicating with us and helping us to get needed test done locally (we live in Indiana). I have started a webpage about Rosalynn and have a link to there site on it. it can be accessed at:
http://www.tr.k12.in.us/trh01/hutchinc/bpi.htm
Feel free to e-mail me if you have any questions.
Sorry if this post shows twice, I forgot to login the first time!

[Mary]

Hi Pam, you have come to a great source of a variety of information. We live in NH and go to Boston Children's Hospital. Dr Waters is the doctor we see there. Please let me know if you'd like more information. Best of luck to you and your son.

[Kristie]

I would suggest getting several opinions. There are some good places out there. One of the place I wish I had gotten an opinion from when my son was first evaluated was The Hyman-Newman Institute for Neurology and Neurosurgery. It is in New York. I like what thier web page said about how they do evaluations. I don't know of anyone who has gone there but the web link is:
http://www.nyneurosurgery.org/cfr/brachial/plexus.htm

I would get a opinion from TCH as well.

Good luck,
Kristie

[admin]

Pam, I'm glad you found this site early on in your son's injury...but I'm sorry that he suffered the birth injury and hasn't recovered 100%. You will find that there is a lot of debate about surgery vs. no surgery, one facility vs. another. I can only comment on my own experience.

Be sure to look at this web site's awareness links. There is new parent information there that will be valuable for you and also information for therapists once you get your son into ot/pt/EI, if he isn't already enrolled.

Also visit: http://www.injurednewborn.com. Francine Litz's website is chock full of information about this birth injury and includes many useful links.

If you happen to be in Ohio, you can visit our support group's website at: http://members.aol.com/kritz74433. I have information pertinent to bpi in Ohio.

My 3 yr. old daughter Elizabeth suffered a severe and permanent injury right obpi. We chose to travel to Texas Children's Hospital in Houston (http://www.texaschildrenshospital.org) for our daughter's evaluation and primary surgery. She was 5 months old. The ideal window of opportunity for surgical intervention is 4-6 months of age if it is recommended by the surgeon (this is TCHs criteria). The critical movement that they look for is the biceps (hand to mouth movement) against gravity. You can call TCH (the number is on the website under the Brachial Plexus Clinic) and talk to Lisa Davis, Nurse Coordinator. There is a waiting list for surgery so you need to keep that in mind. If you can't travel to TCH in person you can mail a videotape of your son for a free evaluation. I think the injurednewborn.com site includes info. on the videotaping protocol and where to send it.

I'm sorry I unloaded so much info. on you but I understand the situation you're in because I was in your shoes 3 years ago. My daughter has had wonderful recovery of function. C5 & C6 were avulsed so her deltoid and biceps didn't work at all and her hand was greatly affected. Her hand is great now and her deltoid is doing fantastic. We're really working on the biceps now.

Let us know of your son's progress. Little boys are such a blessing!

[Alice]

Pam, we all know how you feel. We have been there and maybe still are"overwhelmed and scared". I would definately seek other BPI specialist. I had three opionions regarding my son and surgery and choose TCH for the secondary surgery. It was comforting to know other drs felt the need to do the surgery as well. Kinda gave me piece of mind. Good luck. PS-my son have a left injury and had the Mod quad last Aug when he was 3 years old.

[Bridget]

Hello Pam,

Welcome to our community, I'm glad you found us. I see you have had a bunch of great posts already, and hopefully you will find lots of good information from here on out.

Best wishes, keep us posted!

Bridget