United Brachial Plexus Network, Inc.

Time for more research!! I'm glad I found this site.

My son, Evan, was born with BPI and is now 10 years old. In addition, he has a history of developmental delays and has been and is currently on an IEP. Since he was born, doctor visits only raised more questions and no answers.

Don't want to make this a long note, but here's what I'd like to find out more about:

1. Are Evan's development delays and learning disability related to the BPI?

2. Is he eligible for Social Security Benefits?

3. I heard about a new procedure where muscles from the back are removed and replaced in the arm. The surgery was performed by an orthopedic surgeon on a patient who after 18 years was finally diagnosed with BPI. Any info on this procedure? (I had taken Evan to CHP of Pgh to see Dr. Adelson, neurosurgeon, who did not recommend surgery for Evan, but this was long before I heard about this procedure.)

4. I was told my school district will only provide OT services if they are school-related. He needs to work on his range and motion as well. Any info on fighting for PT services in school? My HMO will not cover.

5. Does anyone have contact info for Ken Levine, Esq.? I read about him in an old Outreach newsletter.

Thanks for any advice/info!!

Im glad you foung this site. I don't have much answeres but wanted to welcome you and your son. I think the surgery you are talking about is the Mod quad? Jade had it done at 15 months old. it greatly inproved her range. Jade has some delays too. she is almonst 2 years old and she doesn't speak. they don't know if its from 2 surgeries in one year or the bpi. i hope find answers!

Welcome to the board. it is a wonderful place for families to share information. I can't say for sure about your sons delays but my daughter was reviewed and has global delays. She is 21 months old and does not walk, only has a few word vocabulary and will not point to anything. On a good note she can count like nobodies business. She is almost up to 10, she can't say 5,6,and 7. Most of her words are numbers. Well that is how Einstein started out I keep telling myself. I have heard of many children with delays and BPI. I can't help think that they must be related. The surgery does sound like to Mod Quad. Gabrielle is scheduled in March for it. Good luck finding your answers. Another wonderful website is injurednewborn.com it helped me with many questions I had.

Cathy,
I was just at Dr. Aldeson's office this morning. If you are still in the area you might consider going back to see if there is anymore that he can do for Evan. They started a Brachial Plexus Clinic about 5 years ago. He did talk about surgeries involving the movement of muscles to enhance range of motion and other stuff I can't remember (we left home at 5:30am for our appointment... it's been a long day!). Anyway I just wanted to let you know that Dr. Aldeson might be doing more stuff with BPI's than he was when you saw him. How long ago was it that you saw him?
Kristie

Welcome to the board, Cathy. If you're interested in an opinion from a bpi specialist, the Ohio Erb's Palsy/Brachial Plexus Injury Support Group is hosting a picnic in June in Columbus, OH. A team from Texas Children's Hospital will be there to evaluate bpi children of all ages. The evaluation is free. I can add your e-mail address to my mailing list and send you the info. when I have the details worked out. We'd love to have you there!

I took Evan to see Dr. Adelson in 2000. I plan to schedule another visit soon.

(((WELCOME)))

hi cathy! my name is joe and i'm a 33 yr. old who suffered my bpi last june during a surgery i needed done. well, after realizing i'de be needing a corrective surgery, i found a wonderful dr. in houston, tx. at the texas childrens hospital, whom i would highly recommend. his name is dr. rahul nath. i've seen his name pop up on these sites quite a bit. if you feel you may need his services, please contact this man, i can not speak highly enough of him!
best of luck! joe

Hello, Cathy. Welcome to the board! I'm sorry that your son has a BPI though. Often dr visits do just raise more ?s b/c there are so many drs who really do not understand BPIs. I suggest you find a dr who specializes in BPIs and bring Evan there for an evaluation asap. In fact, I usually recommend getting 2-3 opinions. I see Rich posted links for some specialists. Also, there's a listing on this site -- go to Resources -- Web Links -- Hospital / drs. We have chosen to follow up with TCH for Nicole's surgeries and have also gotten opinions from Dr. Waters, whom we also respect greatly.

I'll try to answer your ?s based on my knowledge and experience as the Mom of a beautiful daughter, Nicole, who also suffered a BPI during her birth, almost 3 years ago.

1. Are Evan's development delays and learning disability related to the BPI?
I would say that's very possible (esp. the developmental delays and maybe even the LD esp. if he suffered from loss of oxygen during his birth) and would get opinions from PTs/OTs/BP Specialists.

2. Is he eligible for Social Security Benefits?
Again, possibly. It's very difficult to get, but not impossible. The first qualifying factor is income so you might want to first findout how your household income compares with that criteria. If it is too high for SSI, then there's really no point in spending time further going into the application. If it's not too high, then I'd say go for it and see what happens. I've also heard there are attnys who specialize in this (SSI), so that might be something to consider too.

3. I heard about a new procedure where muscles from the back are removed and replaced in the arm. The surgery was performed by an orthopedic surgeon on a patient who after 18 years was finally diagnosed with BPI. Any info on this procedure? (I had taken Evan to CHP of Pgh to see Dr. Adelson, neurosurgeon, who did not recommend surgery for Evan, but this was long before I heard about this procedure.)
You're prob. referring to what TCH refers to as the Mod Quad and what many drs. do some variation of. Our daughter had the MQ in March 2001 at 23 months old and it was very beneficial for her. If you go to http://www.texaschildrenshospital.org - click on Patient Care Centers - select a center - Brachial Plexus, then you can read about the Mod Quad and the way that TCH performs it. As I said, other drs. do it too, but might have some variations. Plus, the post-op protocol often varies by facility.

4. I was told my school district will only provide OT services if they are school-related. He needs to work on his range and motion as well. Any info on fighting for PT services in school? My HMO will not cover.
I see Rich already got you started with the Spec. Ed. sites. He's certainly the source of info. for that. I don't understand why your insurance won't cover though and I would work on fighting that. Ask them to put you in touch with a case manager and findout exactly what you need to do to appeal their decision. It is my understanding that unless the injury recovers, therapy is lifelong for this injury. There are usually annual limits to the # of visits, but they shouldn't be denying you altogether. Also, contact your asst. Attny General's office and ask to speak to the person who deals with insurance problems. Also, contact your state dept of insurance. Just keep fighting until you get what you need.


5. Does anyone have contact info for Ken Levine, Esq.? I read about him in an old Outreach newsletter. If you go to the Resources section of this site, there's a list of attnys. Ken Levine is there and I believe his email address is listed.


Thanks for any advice/info!!
You're welcome. I hope this helps.

-Tina