United Brachial Plexus Network, Inc.

Hello, I am the mother of an 8 month old baby girl with LBPI. My husband and I have just been made aware of all the resources out there to treat BPI and would appreciate any advice or guidance you may have to offer. From birth we were always told "oh, it'll get better" by her doctors and mine. This Message Board looks like a great place to meet other parents experiencing the same thing. Thanks and I look forward to chatting with all of you.

I e-mailed you.
T.

Hi,
Welcome to the boards. I'm Cindy mom to Melanie (3.5) and Matthew (22 months) both rbpi from birth. Melanie recovered by 9 weeks, Matthew's injury was much more severe requiring two surgeries so far. We have him involved in a varitey of therapies - physical, occupational, acupuncture, chiropractic, Reiki energy, myo-fascial release, reflexology.

Cindy

hi Katie's mom - the best thing you can do for your baby is to get to a bpi specialist (or two or three) to come up with a plan or at least some direction.

There is some really good stuff on this site in the Awareness section. http://ubpn.org/awareness check in the resources section

Also read this one: http://ubpn.org/awareness/A2002newparents.html

Educating yourself will really help you formulate questions that you will need to be asking. It's not an easy read - because we are so emotionally involved it can take months / years to actually understand the stuff you'll be reading. I know it did for me...

Is your little one getting therapy?
Do you know about EArly Intervention?

Tell us more so that we know how to help,
francine

My name is Cheri, by the way. I have lost sight of my own identity with all this going on. Katie is in Physical Therapy and we meet with the specialist on February 13. His name is Dr. Addellson at Children's Hospital in Pittsburgh. I will let you know more, once we meet with him. Katie has LOBPI, so far we know she has winging, shoulder abduction, problems with elbow flexion and supination. It's all a whirl right now. She is scheduled for an EMG on Feb. 15. Thanks for all the welcoming messages. I hope to frequent the boards more often.

Cheri,
My son has been seeing Dr. Adelson for a year now. We like him a lot. Ian has been seen by several other docs as well but so far Dr. Adelson is tops in our book. Anyway if you would like any info on what to expect let me know!
Blessings,
Kristie
kristie@jesusway.org

Hi Cheri,
Welcome to the boards. We are here for you emotionally, and educationally (is that a word?). I am the mother of an 11 month old boy Bradley ROBPI. This past year has been quite a ride. I've learned so much from this site. We are headed to Texas Childrens Hospital next week for Bradley's second surgery. I see you live in Pa. I live in Allentown. Please feel free to call me anytime. 1-610-437-0578
It's sad at the number of parents who are told "it will get better". We were told the same thing along with many others here. You are your child best advocate, do what your gut instinct tells you and research, research, research.
Best of luck and again welcome:-)
Allison Steigerwalt

Hello! Do you live near Pittsburgh? My in-laws live in Mt. Lebanon, outside of Pittsburgh.

We live in Ohio. Every summer we have a bpi picnic. Once our details are ironed out I'll post here so, if you'd like to join us (Pittsburgh is 3 hrs. from Columbus), you can drive over for the day! We always get a number of lovely families from PA.

I don't have any experience with Dr. Adelson. We take our daughter to TCH in Houston, TX. Elizabeth is 4.5 yrs. old now and still improving from her surgeries at TCH. Be sure to write down all of your questions for Dr. Adelson before you go there. Francine's website has tons of great information for parents of babies affected by bpi: www.injurednewborn.com