United Brachial Plexus Network, Inc.

My daughter sustained a severe injury at birth leaving her right arm with Erbs & Klumpkes. She had no regeneration through the biceps, cannot flex at the elbow, but has very little ability to open her fingers. She is now 7 and she uses her hand strictly as a helper and can bear a minimal amount of weight with her hand. Has anyone had successful surgery to help in this situation? If she could just flex at the elbow, she might be able to do more. When she was born, she was sent to Dupont in DE, received therapy there, also therapy at CHOP whose doctors concurred at that time that surgery would not help. We now live in Allentown and she was going to Good Shepherd for occupational therapy but they released her because her "life skills" are age appropriate at this stage. Anyway, looking forward to hearing from anyone with any suggestions at this point. She amazes me everyday with the things that she accomplishes, but I am always on the lookout to help her! Thanks!

Karen
I have two children who were born with brachial plexus injuries. Melanie (3yrs) and Matthew (19 months). Both of them have been seen at CHOP. Melanie recovered at 9 weeks and Matthew has been through two surgeries and a way to go. We have him involved in a few different things which I feel have impacted his recovery. He goes to physical therapy, occupational therapy, aqua therapy, chiropractic, acupuncture, and Reiki energy.
I currently live in the Poconos but we're building a house in New Ringgold (west of Fogelsville). I have started a support group, if you'd like to attend a meeting (once our house is done) please let me know.
Cindy

Hi Karen,
I was hoping you would post again, you posted a while ago and I tried but was unable to get in touch with you. I live in Bethlehem, and my daughter had surgery 3 years ago when she was 13. She had different issues than your daughter did, but you should know that there are many many things they can do for older kids (oh to be "older" at the ripe old age of 7!)
Also, with the severity of your daughters injury maybe there is a way for you to continue receiving therapy - we have a very good therapist located in Whitehall who has quite a bit of experience.
If you would like to chat, just email me and I'll send you my phone number.
Take care,
Sue

Hello Karen,
Sue and I both take our children to a therapist in Whitehall Cindy Miles and assoc. 610-820-7667. There is another therapist there that does mayo fascial release, it's done wonders for Bradley, my son is 9mo. with a robpi. Please call me if you have a chance. There are a number of families in Allentown dealing with this injury. Perhaps we can get together! Glad you posted!

Allison 610-437-0578

I would love to! Please let me know when you are settled. We are in South Whitehall, just a stones throw away! Thanks!

Sue, thanks, just shot you an email with my number! Looking forward to talking with you!

Hi Alison. I can't believe the response from people so near! We really thought we were alone! I am so excited to contact and meet families closeby who can understand this injury and what it's like to go through the things that we do! It's too late tonight, but I will definitely be calling you within the next day or so! Thanks so much for responding!

Hi Karen! I was just wondering is this is the same Karen I "met" ala email via Kim Wylie several years ago??? Havent heard from you in a while! Hope all is well! Love, Joann (near Reading):o)

Yes it's me! I lost your email since we have been through at least 3 new internet providers and are now accessing via cable. Lost my address book somehow along the way! How are things? Shoot me an email and let 's get caught up! bmaster@ptd.net

I can't believe you all are so close to me! It's been a few days since I've been on the boards, so this post was a few pages back! I live in York, PA and have been taking my son, Peyton, to Shriners in Philly. I haven't been overly happy with the therapy options here in York. I'd love to get together with all of you in the area! Cynthia, are you still planning on having a get-together when your home is done?