United Brachial Plexus Network, Inc.

Hi,
We just moved to Northern Virginia. I need to find a specialist for my daughter. She is 9 with Erb's Palsy. For the past year we have been getting differing opinions as to what to do for her. Her shoulder is weak and her elbow is contracted. Does anyone have experience here with a doctor. I was thinking I may take her to Boston to Dr Waters... Thanks in advance..

You can always check the medical resource page on this site.

We've used Dr. Waters for a second opinion before considering surgery for our daughter after an MRI showed her shoulder to be subluxed. I know there are many families here who have used him and think he is wonderful to them and their children. You can email him @ Peter.Waters@Childrens.harvard.edu or contact his nurse Paula @ (617) 355-6021 to talk with him.

We've chosen to see Dr. Scott Kozin at Shriner's Hospital for Children in Philadelphia after I heard him speak at a seminar. I knew immediately that we had to switch our daughter's care to him. He is extremely knowledgeable, very caring, takes him time with me and my daughter, up to date on research, his staff is wonderful, his technique is phenomenal, and I can't say enough good things about our experiences thus far with him and his staff. Shriner's is a free hospital to boot. You can email him as well @ skozin@shrinenet.org or call 1-800-281-4050. His coordinator is Linda Filipone.

Good luck.

Tanya in NY
Amber's Mom, ROBPI, almost 4 years

Hi!

Definately go to Boston to see Dr. Waters...Our daughter just had a muscle tendon transfer with him 7 weeks ago, and she came out of the cast being able to do more than she could before...Juliana is almost 7 and has a ROBPI...she has contracture at the elbow, had no external rotation with her albow at her side, only about 40% supination, and could not get her hand behind her head without helping it...My husband and I were in tears after the cast came off! He is a terrific doctor, very nice and patient and will not recommend surgery if it is not needed...Juliana had an MRI that showed some abnormality in her shoulder joint, and he told us- she will do excellent if you have this surgery. I talked to many people there, and other's who's children have seen him, and everyone says he does not reccomend surgery on a whim...he is very conservative. It is well worth the trip...we are in NY and it is about a 4 hour drive for us, but the city is great and we make a little trip out of it each time. Please feel free to email me if you would like... kpoje@hvc.rr.com. Good luck to you and your daughter

Kim

We live in Northern VA as well and take our daughter, Natalie ROBPI, to see Dr. Kozin at Shriners in Philadelphia. Not a bad drive to Philly from NoVa; the Shriners can also provide transportation to the hospital. We've had consistently good PT and OT services through Children's National Medical Center (both DC and Fairfax outpatient) as well. Feel free to email with any questions.

Becky