United Brachial Plexus Network, Inc.

Hello, It has been a LONG time since we have visited the messageboard. My little one is Alyssa, She has a R.BP injury from birth caused by a midwife. She had less then aprox.10% movement. We had our first surgery at Shriners and the outcome was not showing much change from before and after. The Shriners just told us to wait, There was nothing more to do for her. I was SO scared and lost till a friend told us about the TCH in Houston texas. We went last March for her second surgery where we went through the SOL splint and Dr.Shenaq told us before surgery that given a week or two after the splint came off she would gain 50% movement in the arm. NO WAY! We could not even think of that after more then a year with almost nothing and well...Alyssa now can reach above her head, put her hand to her mouth and..GIVE ME A HUG!! No bear hugs yet but were working on it:)
At this time I am at a loss she nolonger qualifies for Far Northern and now that she has regained so much movement she does not qualify for E.I.
She goes to OT 2 times a week and we need to get her in for aqua therapy and ultra sound massage therapy but we have no insurance now and CCS does not cover these things.
SO.. WHAT IS NEXT FOR OUR ALYSSA? ANY IDEAS PLEASE LET US KNOW!?! THANKS WORRIED MOM ALITHIA:)

What is Far Northern? is that your insurance?
And does your daughter supinate? If not - that is 25% that will cover her for EI

Will your insurance cover additional physical therapy? Because many physical therapists who work in the water, will just bill the insurance as plain old physical therapy. And the ultra sound massage could be done by a PT as well and charged as one of their modalities.

tell us more ok?

-francine

How old is your child? Is there an Al Sigal center near you? We have our daughter 3yrs old in a class there. We do pay $150 a month for 5 x wk for 2.5 hours a day. There is a PT,OT, Speech therapy with a teacher, teacher ass. in the class at all time. They do Ot PT and they have swimming one day a wk for 1 hr. Try to see what community services are available threw them. They are wonderful.

Toni

well Far Northern is like CCS. and my husband got hurt on the job so we do not insuance any more. she no longer qualifies to go to EI. and she can supinate maybe 10 to 20%.
We go to Shriners tomarrow I will gwt back to you with more ok

What is tha Al Sigal center?? never heard of this. Alyssa only gets two hr.s ot a week. She is 2 1/2 years old. How would I find out where the nearest place like this is closest to me? I am almost ready to move to an area where they will do and have more to help my daughter, the only bad part is I willnot live in a big city.

My son is much older. He's 12 and they cut all his therapy and said he doesn't qualify through the school because he isn't effected educationally(that's bull and another story) Anyway, we do the therapy ourselves. I've been to so many therapist. I make notes to remind me of things and I have had to become his therapist. We're currently working on getting him a few motivational visits with Children's Rehabilitative services. Good luck to you. You will be your childs biggest advocate!
T.

You said you husband is out of work because of injury.

Have you checked to see if your child qualify for SSI or just Ss...
OBPI is a disability.... check the www.ssa.gov. It is the SS administration... there is a frequent Q&A page or just call the 800 number for Social Security....
Hope you can get help.
Kath

What State do you live in? That may help us try to figure out what agencies can help you...I live in IL and we have an agency that helps us pay for my child's injury after insurance does.

AL SIGIL Centers are for children with disabilities.
They are funded either federally, or by state aid. They provide services for United Cerebral Palsy Assn, hearing and speech, physical therapy, occupational therapy, and any other problems dealing with disabled children. I am unclear of what state you live in. I am not even sure if Al Sigil Centers are even available outside NY state. But there is a United Cerebral palsy Assn everywhere,and they can point you in the right directions. I hope you can regain services for your child.

LOL
Toni(NY)