United Brachial Plexus Network, Inc.

I have just recently learned of this website, and I plan to have my daughter visit with me here soon. She was born September 11, 1992, after 5 hours of "hard labor". We were told that her arm would eventually regain movement, but we took her to a pediatric neurologist anyway. She was there diagnosed with Erb's Palsy and placed in therapy. At 3 months of age she started moving her arm occasionally. We have been told now that she will not improve anymore. She is just now beginning to notice that she is different. We live in Mississippi, and we are interested in finding another child her age for chatting. Thanks!

Cecelia welcome to the message board!! There are quite a few families with children you daughter's age I believe.

I want to bring your attention to an area on this site that has a whole bunch of information that may be helpful for you... it is found at:

ubpn.org/awareness

So, glad to see you here and you have a wonderful holiday,
francine


www.injurednewborn.com
www.injurednewborn.com/maia/homepage.html

Hi! My name is Susan and my ten year old son, Benjamin, just had surgery in Texas on Nov. 20. He was diagnosed with Erb's shortly after birth. He had no movement until about 4 months of age, and even then not much. He had some therapy throughout the years and lots of fighting with the insurance. I too discovered this sight and met Dr. Nath from Texas Children's Hospital at the Brookfield Zoo in Chicago. This was in Aug. and we went to Texas in Nov. for the mod quad surgery.
Ben is wearing a splint for the next 8 weeks, but his outlook on life has really changed. He thinks that some day he might decided to become right handed. I would love to hear from you and help you in any way I can. I don't have e-mail at home and vacation starts this Thursday. Feel free to e-mail me at schmiel@d21.k12.il.us. My home number is 847-726-7056, call any time. I teach so I am on break until Jan. 7th---yahoo!!!! Hope to hear from you........prayers and best wishes, Susan

since you posted your email I have taken the liberty of sharing it with a friend who has a daughter and a friend who has a son- the same ages- maybe they will write, seasons greetings!

Hello, Cecelia. We are not from Mississippi and our daughter is only 2 1/2 y.o., but I would like to say welcome to the board. Your story is all too familiar with what many people were told. Also, many doctors and therapists are not up to date on the surgical techniques available. So, I would not give up hope at this point. There are many people here with children your daughter's age or older who have had their first surgery recently and have seen improvement. Francine already directed you to the sources of info. and you'll find lots of interesting reading there. We bring our daughter to Texas Children's Hospital (TCH) and have been very pleased with their expertise. There are other BP clinics around the country as well, although I don't know of any in Mississippi (I love typing that!!) offhand. If possible, I think it's good to get at least a couple opinions. I'm sorry that your daughter was injured, but glad that you found us. Is you daughter in PT/OT now? What kind of movement does she have in her arm/hand (if you're comfortable sharing that)? Ask any ?s you have and we'll try to help. I know there's a lot to learn and it can get very overwhelming. -Tina

Welcome to the board. If you are interested in a pen pal for your daughter on the first page of this website there is a section called "Pen Pal Program". My son Logan is 5 and he is 1 month post-op today. He had his second surgery the day before Thanksgiving. When he is older and can actually communicate with words on paper, I will probably see about getting him a pen pal off of this board. But for now the only thing he can really write is his name. He will be entering into Kindergarten this next school year. He is a summer baby so we kept him back another year to give him the extra advantage.

Everyone above has pretty much said about the same thing that I would say to you. Texas Children's Hospital (TCH) is probably about the most talked about hospital on this page, but there are others around the country that deal with this type of injury too. You just have to do your homework and decide for yourself.

One thing that I do want to add is that there is an evaluation team from TCH that travels during the warmer months (summer) to different states to places of interest - zoos for example as mentioned above by the woman who took her child to the Brookfield Zoo in Illinois. I was there too and that was when Dr. Nath from TCH evaluated Logan and confirmed that Logan had posterior dislocation and recommended the capsulodesis procedure along with the pectoral release. I find it comforting that these people are willing to travel at their expense and give these evaluations free of charge.

Maybe check at your closest mayo clinic to see if they have anyone that they could get you in touch with. The Shriner's hospitals are another place to check with, although I don't think they are as specialized in this particular injury as your bigger hospitals may be.

Nuf said!

Have a wonderful holiday!!!

Desiree