United Brachial Plexus Network, Inc.

I'd like to meet other families in CA for support. Our son Owen is 6 months old. We are from Fontana, CA. Our son is scheduled for surgery at TCH April 30th for the nerve graft. He hasn't made much progress since 2 months of age. He can use his hand and and fingers and lift his arm about 45-90 degrees. He has no movement in his bicep at all. He has good ROM since we have been working with him everyday.

Where are you from? How old is your child? How is your child doing?

Roy,
go to the homepage of the UBPN site and click on the "resources" link. Then click on the "Onine Directory" link and then "US Listings" and then "California" and you will see who is registered online near you.

What is Fontana near? There are listings for Support Groups in San Diego, L.A. Ventura County and Bellflower, and Sacramento. There could possibly be more support groups that I don't have the listings for. You may ask Francine Litz to check if nothing I've listed is near you.

Peggy

I'm also from California but at the other end of the state. I have recently heard of a BPI support group that meets monthly at the Shriners Hospital in Sacramento. I'm planning a July picnic in Sonoma County which is still a long way from Fontana but if you'ld like me to put you on my mailing list I'd be glad to.

BTW we brought our daughter to Loma Linda for her nerve graft when she was 1 year old.

Joshua

How is your daughter doing? Who performed the surgery? I called Loma Linda and couldn't find anyone dealing with Erbs Palsy specifically. My insurance finally authorized me to go to TCH after I declined to go see a hand specialist in San Francisco. What type of BPI does your daughter have?

Hi, I'm in SF. My dd had MQ at TCH, we also see several local docs.

My girl is doing great as a person but her arm is nonfunctional and without sensation from the elbow to her finger tips. At one year old, she had an exploration and repair of her brachial plexus and attemped nerve graft (the nerves were to damaged to graft) done by a pediatric neurosurgeon (Dr Shoki Yamada) in Loma Linda. He had done several of these proceedures in the past and we got his name from a UC Davis Medical Professor through my wife's uncle (a med student at that time).

We had had a series of disconcerting experiences with CCS and the Shriners in San Fransisco as well as Stanford. This is a long story that I will tell someday. We wanted an opnion that was out of the Northern California "Loop" and Dr Yamada took a fairly conservative approach that we felt confortable with. He was already CCS authorized.

My daughter has a LOBPI with C8/T1 avulsions (posterior and anterior proximal nerve root avulsions), a pseudomeningeocele from C4 to C8 and other damage of C5-7. She also has a right hemidiaphram paralysis but probably no Horners sign. We have a family history of different eye sizes so it's hard to tell.

Loma Linda doesn't have a BPI clinic and I wish I had heard of TCH's program at the time.

Because of respiratory complications after surgery my daughter had to spend a month on a ventilator at Loma Linda Childrens Hospital where her life was saved by extremly skilled and knowledgable Doctors and Nurses.

We are afraid to subject Tenaya to any other surgerys but she may have to have her wrist fused in the future. She might benefit from muscle transfers but we can't take the risk.

It takes a great deal of bravery to turn down proceedures that have been recommended by doctors and a lot of second guessing. I admire anyone who has to make these decisions on their own!

Joshua

I've gotten referrals to see highly recommended hand specialists in CA, but I didn't choose to go that route because Owen's injury does not effect his hand.

I was told by my insurance tht Dr. Hoffer in LA and Dr. Hentz in San Francisco are really good. Might be worth the research. I don't know anything about them. If anyone finds out, please let me know. Thanks.

Dr. Hentz is listed here as a specialist. We've seen him about 3 times, he's also a hand specialist and is a part of Stanford's hand clinic, which they see BPI patients through this clinic once per month.

We saw Dr Hentz also. He wanted to do some radical (at that time) procedure that involved harvesting a nerve from Tenaya's leg and then grafting it to the contralateral (good) brachial plexus nerves and tunneling it across her chest to the injured arm. We went elsewhere!

Joshua

The San Diego Brachial Plexus Network is the nation's oldest and is a very active support group. It maintains a list that incorporates hundreds of people in California. Please contact: tinaarvizu@hotmail.com, or c_cannon@alumni.ucsd.edu for more information.

In August, they hold an annual picnic. I believe this year will mark the 8th annual! It's not to be missed. People come from all over California. You'll meet more people than you can imagine.

The picnic is held in Carlsbad, which works well if you want to show your family Legoland and make a weekend of it. Hope this all helps. Cathy