United Brachial Plexus Network, Inc.

Hello,
My daughter had a complete avulsion in two nerves and scar tissue on a third nerve. Altogether she had 5 nerves damaged at birth on her right arm. We had surgery at the Mayo Clinic in Minnesota in October. I really haven’t seen any recovery as of yet. I guess I’m looking for results on nerve graph surgery. How long did it take to recover? What type of recovery might we expect? I understand each child is different but I just need some help understanding where we might actually end up. Dr.s are saying expect 70-80% function. In real life terms what does that mean? Will my daughter be able to lift her arm above her head, through a ball, swim, drive, function normally?
Also what if any social services are out there for her. My job is changing insurances which will limit the amount a PT/OT she can receive in a year. This is awful to me. I don't understand if DR.s think it is medically necessary for the therapy why would the insurance deny/limit?
Oh well any help will be greatly appreciated.
Thanks
Adia's Mom

Dear Adia's mom:
I am glad you found ubpn, though I am sorry for your pain. My daughter is now 7 years old and a happy and healthy 2nd grader. She had 2 stretched, 2 ruptures and 1 avulsion. She also had primary surgery, at 4.5 months old.

Nerves grow back very, very, very slowly. The key to recovery with nerve surgery is patience. And it is so difficult to be patient. However, therapy is a big part of recovery, so you should continue it. You need to find Minnesota's "birth to three" or "early intervention" program. Your pediatrician should be able to help you there. If not, call your local Department of Health. These "early intervention" programs are not income related and usually involve services at home. Some programs will also pay for aquatic therapy. You should not need to use up your insurance ot/pt on this. As for why an insurance company will deny or limit: this is their theory(not mine)...if this is an injury, then it should have a discreet healing period. Ie, if you fell and broke your wrist and needed surgery and then therapy, you would follow a fairly straightforward course. If you needed one or two more...you would get it. But we are talking about a lifetime injury and they don't want to cover it. Talk about circular reasoning, my insurance company wouldn't pay for primary b/c they claimed it was experimental, but when I asked for ot and pt, they said I maxed out. When I asked what they considered the proper course of treatment for bpi...they said ot and pt. So I asked for more ot and pt and they said no. Apparently, she was supposed to be "better already". Hmmm, don't I wish!

So, you are not alone in your frustration with insurance companies. Many have found help in a single case worker.

And what will she be able to do? Anything you encourage her to do? My daughter swims, plays basketball, rides horses, played tennis, climbs rock walls and will start diving (springboard and platform) in January. She does it all a little differently, she compensates a lot. But she does it. She quit dancing because she was frustrated there, but it hasn't stopped her from anything else. Her function will be dictated by her recovery. And, like I said earlier, that will take time. The kids recover for a long, long time. She will amaze you with the things she does, even after you think she won't be able to.

The most important things you can do are to love her and play with her. Tell her she is great and she will believe it. Tell her she can do things and she will. Yes, I had to take Juliana to the playground for "remedial playground time"! I actually taught her how to climb on the equipment. But it was worth it, because she is accomplished on all of it!

Believe in yourself and believe in her.

Keep asking questions. We have great parents on these boards.

good luck,
claudia

Hello Aida's Mom,
Welcome to the Message Boards and our great parents who give lots of information and Support.

I do want to say there is alot of information,too,about what all of us us "BPI-ers" can accommplish and do every day on the "Adults with OBPI Message Board" too. Actually, you are welcome on ALL Message Boards AND, there are NO DUMB QUESTIONS, ever. I for 1, learn something new on every post that I read.

Carolyn J
LOBPI, 68 & Proud of it!

Hello, Adia's mom. Welcome to the board. I'm glad you found your way here, but sorry that you had to be here. Claudia gave you a lot of great info. already. This should be your contact info. for the birth to three program:

Programs for Infants and Toddlers with Disabilities: Ages Birth through 2
Marty Smith, Part C Coordinator
Part C-Infants and Toddlers with Disabilities
Minnesota Department of Education
1500 Highway 36 West
Roseville, MN 55113-4266
(651) 582-8883; (800) 728-5420
E-mail: marty.smith@state.mn.us
Web: http://education.state.mn.us/

I got the info. from the nichcy website (National Dissemination Center for Children with Disabilities)
http://www.nichcy.org/stateshe/mn.htm

About recovery, our daughter had primary surgery at 10 months; at about 5 months post-op, she was basically about back to where she was pre-op. So, it wasn't until after that point that we gradually started seeing progress (very slowly). The biggest improvement we saw from a surgery was the muscle & tendon transfer / release surgery our daughter had when she was almost 2 y.o. Nicole (7 1/2 y.o. now) has had a great recovery considering how severe her injury was. I really attribute a lot of her recovery to all the therapy we've done (PT, OT, Aqua PT, dance, Kindermusik, therapeutic horseback riding, etc.). It's pretty standard for insurance companies to limit the # of therapy visits, but if you use Birth to Three for some of the therapy that should help. Plus, you can often get more therapy than the insurance benefits state. You just have to get a case manager with the insurance co. and work with them to get more visits allowed. A good pediatrician can be a key to helping you get what you need for referrals and letters, etc. Another key to continuing therapy is that insurance companies look for improvement. As long as the child is improving, then the therapy is clearly justified. However, even though our children will medically need some "maintenance" therapy so they don't lose what they've gained, insurance companies don't want to pay for that. This is where you need to have a good therapist b/c if the PT/OT is good, then there should be improvement for a few years or more at least. Anyway, you have time to work all this out. In the meantime, enjoy your sweet baby girl. Take care.

~Tina, bpmom@comcast.net, mom to Nicole (7 1/2 y.o. w/LOBPI) & Joshua (2 1/2 y.o. w/NOBPI)