United Brachial Plexus Network, Inc.

I know I've already posted to two posts, but I wanted to say how relieved I am to find a forum of other people dealing with BPI, either because they have BPI or they are parents of children with BPI. My second child was born in November of 06, she was 9lbs and was born with BPI in her left arm. Her shoulders got stuck and the doctor had to twist her out of me. For the first day and a half of life she had no movement in her left arm, but as the days have gone by, with the help of therapy twice a week and therapy every day at home, movement in her arm has been improving. But a lot more improvement is still to come. She moves her shoulder a lot and has been moving her fingers, but as of right now, at 8 weeks, there is still no movement in the elbow and very minimal movement in the wrist. We've seen a neurologist at Children's Hospital of Philadelphia (CHOP) and we've recently seen Dr Kozin at Shriners (very friendly and informanative). Both doctors have given us the timeline for movement and surgery.
After the visit to Shriners last week, where Dr Kozin really explained a lot more to me, I started to feel myself getting ready to just breakdown and cry. Not because Sabrina (my daughter) won't heal, just I think it was the first time I realized she might not heal 100% and that she may have a rougher childhood than other kids. One of the therapist at Holy Redeemer gave me paperwork about the UBPN site and I am just to elated to find this forum and know I'm not alone because I was starting too.
Trust me, I'm not giving up. If I have to move mountains for my daughter.....I WILL!!!!!

Hi and welcome to the boards. Congrats on the birth of your daughter. I'm Cindy mom to Melanie (7) and Matthew (5.5), both are right bpi. Melanie has recovered 99.9% and Matthew has a permanent injury.

We see Dr. Finkel at CHOP - is that who you saw? We love him!! Matthew spent 20 days at CHOP after he transferred from the hospital was born at, his phrenic nerve was also damaged which required him to have oxygen. Looking back we have been through so much and it was overwhelming at times...but for me eventually there was acceptance and I was able to move on. Matthew was classified as having a severe injury but his recovery is great according to his specialists, they did not expect him to get this much back.

If you're open to it I would suggest acupuncture at this early stage.

Good luck on your journey, we're all here for you and again - welcome.
Cindy

Hi and thanks for the encouragement. Dr Finkle is who we see at CHOP.
I know BPI is not a quick recovery, but if you don't mind me asking, how long of a period of time did it take for Melanie to recover? Also how did acupuncture help?

Hi;
I just wanted to say welcome to the boards. I'm sure you'll find everyone here friendly and supportive. I'm glad you were given info about the boards. I personally just happened to bump into the sitealmost a year after Katie was born with a LOBPI. I just wanted to say that I know how you feel about your child not fully recovering from her injury. I know even now, four and half years later, after a doctor appointment it hits me like a ton of bricks that my baby will be affected for life by this injury. It's hard to swallow, but I've found the boards to be very helpful and I'm sure you will too.
We see Dr. Adelson and Dr. Goitz at CHP (childrens hospital of Pittsburgh). We are from western PA, close to Johnstown. Our thoughts and prayers will be with you from the Western side of good old PA!

Cheri, Mom to Katie, 4, LOBPI

No, ask away. She was recovered by 9 weeks.

I emailed you on the acupuncture

Philly1103,
Welcome to the boards....I just popped in to tell you that you are definately not alone in your feelings. I felt the same when my son was born 8 1/2 years ago but can tell you that in time that feeling lessens and things get better. My son has a moderate to severe injury but has recovered quite well and really has no secondary issues....YET !! But I too used to break down after seeing doctors, or worse yet during the visit !!! I cannot tell you about spontaneous recovery, because we were not that fortunate, but can tell you that you are definately not alone. GAYLE mom of Brandon ROBPI
I am sorry, I forgot to add, that Brandon has had two surgeries and two years of EXTENSIVE Physical and occupational Therapy. Then we all needed a BREAK !! WE lost our insurance and I Started doing therpay at home. The doctors are thrilled with his progress !!! No more surgeries for us at this time !!!!!


Message was edited by: brandonsmom

Welcome! We live in South Jersey and have a daughter with a LOBI and she is now 11. We have also seen Dr. Kozin and you and your child are in wonderful hands. Blessings to you and your family and your new baby. Cheryl

Hello

Welcome! I'm sorry to hear about your daughters injury. My son is 12 and was also injured at birth.....My son is a patient of Dr. Nath in Houston, Tx he just had the Triangle Tilt surgery last August and is improving every day.......if I can help in anyway ....let me know..God Bless
Tina

WELCOME!!!!!!!
I THINK THAT YOUR DOING A WONDERFIL JOB.MY SON HAD NO MOVEMENT IN HIS ARM,WRIST,SHOULDER AND FINGERS FOR 5 TO 6 MONTHS.HE HAS HAD 5 SURGERIES WITH DR.NATH IN HOUSTON AND IS DOING WONDERFUL.YOU JUST KEEP MOVING THOSE MOUNTAINS AND EVERYONE ELSE WILL SUPPORT AND PRAY! GOOD LUCK!!!
THANKS KATHY