United Brachial Plexus Network

Hi and hello to all. I just found this board and it is right at a time that we are dealing with my stepson's bpi. I would like to explain his story so that you all understand where we are coming from before I ask questions. (I am a talker, so sit back and get a cup of coffee! Lol!).

Trent, my ss, was born with a bpi. To be honest that is about all I know about what happened to him. His dad said that he had gotten "stuck" at birth and he saw the Dr. twist his head while getting him out. Of course, he is the only one who saw this as none of the nurses backed him up and the Dr. never admitted to it. Trent received therapy (and in my lack of knowledge, I don't even know what kind of therapy you get for this type of injury) until he was about a year old. He is 4 now. My husband - Trent's dad - and his now X split up about the time that Trent was a year old. When my husband left the home, Trent lost his medical insurance. For reasons unknown to us, his mother never pursued his therapy although she had state assistance (including assistance for his type of injury). Trent came to live with us in June of this year full time, and in doing some research, I have found that we can get him back on the state program for special needs children and get his therapy again. We are waiting to get him an evaluation before we can start the process since it has been so long since he was last seen for this.

As you can imagine, this is pretty new to me. I don't really understand what happened internally except that he had some nerves damaged at birth. I have been with Trent and his dad for about 2 years now and since I will be the one contacting the Dr.'s and setting up things for him, I am indeed interested in what is going on - or what happened - to Trent. I know that physically Trent has limited range of motion of his right arm. It is smaller, and does not respond like his left arm. (Although I am amazed by what this kid can accomplish - good and bad Lol! - with his handicap).

Where can I get information about my ss's injury? I have read through the forum here and a little on the main page before I decided to post. I have heard a lot of talk about surgeries on the forum. What are the surgeries for? Are they something that is recommended often for these injuries?
My husband has said that he was told that by 4-6 Trent would have his nerves healed and just the muscle will need to be worked on. Has this happened to anyone? Is it a long process to get the muscles working properly? Is this where the surgeries come into play? (I saw a post where after one of the surgeries a little girl could reach over her head).

A lot of questions, I know, and I am sorry. I just want to be informed so that I can help my stepson as much as possible.

Thank you to all!

Mel!

Hi Mel and welcome to the message board!

There's a lot to read on this site and it will help you educate yourself on what it is, how it all works and about the surgeries as well.

ubpn.org/awareness

look in the Birth Injury section.

Also, look on the top header and click on "Information" and you will find definitions of a bpi and also ARTICLES about the surgeries.

I think the best thing you can do for Trent at this point is get him to a brachial plexus specialist so that he can be evaluated on where he is and if there's anything they would recommend to help his range of motion and whatever issues he may have because of the injury.

If you tell us what state you are in, there maybe a clinic right in your area. And if not, I can tell you that we took Maia (our 3 1/2 year old) to Texas Childrens Hospital in Houston. You can send them a video and they will give you an idea of what they think by looking and then either say he's ok or they may want to see him at clinic, too.

(Just so that you know, there is much in the way of free medical airfare and medical discounts for hotels and all - so a trip there does not have to be a huge expense)

Also - I put up a website about how it happens...
www.injurednewborn.com

and a website about my daughter's journey
www.injurednewborn.com/maia/homepage.html

Keep on asking questions, and good luck to all of you - keep us updated ok?

big hugs,
francine

Hello Mel, and welcome to our community.

It is so neat to read of your interest and support for your stepson, he sounds like he will be in good hands with you.

Francine has given you pointers to tons of information, I back up her recommendations and wish you good luck in wading through this sea of information.

If you have any questions, just ask!! Also, please email info@ubpn.org with your mailing address so that we can send you Outreach, the UBPN magazine-style publication.

Best wishes,
Bridget

Hello, Mel. I'm sorry that your ss has a BPI, but am glad that you found us. I see that Francine, who is always on top of things here and is amazing, already pointed you to some great sources for info. That will keep you busy reading for a while, so have your cup of coffee ready! We too take our 2 1/2 y.o. daughter, Nicole, to TCH where she has had surgeries to help her BPI. I'm sorry for Trent that his therapy was put on hold, but I'm sure it's not too late to at least be able to provide him with some help. There are various types of therapy too that people have found helpful including not only PT/OT, but also aqua therapy, hippotherapy, electrical stimulation, chiropractic, etc. etc. I think the place to start though is with an exam from a BP Specialist and a therapist (as you mentioned that you will be doing). Also, since he will be starting school soon (if not already in school), you might also want to get in touch with the school services to inquire about getting assistance for him there (at no cost to you). If he would've been right handed, but is being forced to be left handed, then it might be even more difficult for him to do things like write with his left hand. I'm not sure the right way to say this so I hope it doesn't come out wrong, but you might want to think about how you want to refer to his "handicap" -- perhaps as a disability. Technically, the meanings are pretty similar, but it just comes across sounding differently to people and could affect his perception of his injury. I hope I didn't offend you and perhaps you've never used the term around your stepson anyway. I just know it makes me feel bad when I read the expression "good arm" or "bad arm" on here b/c I've never felt like Nicole has a bad arm and wouldn't want her to think that way. Well, try not to get too overwhelmed with all the reading. It is a lot to take in all at once. Feel free to ask any ?s you have and you'll probably have many. Best wishes to you with your new expanded family. Take care. -Tina

Welcome to the board. Your stepson is very blessed to have you in his family. I see you've already been pointed in the right direction by the others (very dedicated and knowledgeable moms, I might add). If you're in the Ohio area you're welcome to join our support group. We have an annual picnic in June and, once again, a bpi specialist will be there to evaluate children. You and your family are welcome to join us!

I'm not sure if anyone mentioned that you can request a video evaluation from Texas Children's Hospital in Houston, TX. Many of us go there for our children's treatment and use video evaluation to periodically see how our children are progressing. All the info. should be on Francine's website which she has updated recently: http://www.injurednewborn.com

Dear Mel,
I don't have alot of additional info to add to the already great advice that you have recieved here on the board. I just wanted to say as an adult step-daughter myself, what a blessing you are for Trent. The love that you are showing him by doing the research to find out about this injury, and the options out there for him is invaluable. What a wonderful example you are for step-mom's and mom's alike!

Welcome to the board. So glad you found us. My son Josh is 4 as well and he has a left BP injury. He has had therapy since 6 weeks old and had surgery last summer when he was 3. He had difficulty raising his arm and putting his hand behind his head or even just scratching his ear. The surgery last summer has given him better movement. He can now raise his arm and touch his ear and put his hand behind his head. Even with 3 years of therapy my son still needed the surgery. Three different drs told us he would "benefit" from the surgery, and he did. He is still having trouble with supination, but we are working very hard on it. Before the surgery his arm was very tight and you could barely turn his arm in that direction, but now it goes easier there, but he just cant do it on his own. Josh has services where he receive Occupational therapy 2xs a week and speech 2xs a week and the local school district pays for it. He also get 1 x a week P/T which my insurance pays for. We signed up for something fun, but also therapy, gymnastics on Saturday mornings. He loves it and doesn't realize he is getting good therapy in as well. Great advise someone gave, contact your local department and tell them you have a child with possible delays and want his tested for services. My son has been receiving services through my local services since he was 6 weeks old. Any other questions you may have feel free to ask. We are all here to help each other. Take care and good luck.

welcome
keep asking questions
I think youre doing a great job