Help selecting a BPI Clinic/Specialist

[admin]

My son, Blake, suffers from a brachial plexus injury sustained at birth. He is now 11 years old. For these 11 years our family dr. and a pediatric orthopedic dr. has told us that there was nothing that could be done for Blake. He has limited use and range of motion in the affected arm. The socket of the injured arm has flattened out, allowing the ball to slip out of position. The only thing holding his shoulder in place are the muscles and tendons and ligaments in the arm. By surfing the web, I happened upon this web site. I was exstatic to learn that there indeed IS treatment for my sons injury. We want to take him to one of the BPI Specialty Clinics, but know nothing about any of them or the drs. and would appreciate advice from others to help us decide which one we should consider for our son. Like all of you, I'm sure, we want to know that our child is getting the best treatment possible. If you have knowledge, good or bad, about any of these clinics, we would welcome your input. Thank you.

[cbe411]

Hi Tammy and welcome! I am glad that you have foud this site! There are many great clinics out there and many see different doctors/clinics. It really boils down to what you are comfortable with. I have hear great things about Dr. Waters at Childrens in Boston, Dr. Kozin at Shriners in Philadelphia, Dr. Nath in Houston at Texas Nerve and Paralysis INstitute, Sr. Shenaq at Texas Childrens Hospital (not accepting new patients right now) in Houston. It really is best to get in contact with any of these dotors that you are interested in and see what htey have to say. It will boil down to who you are comfortable with. Many of the BPI specialists have a slight different view on things so PLEASE check into it and feel free to ask questions. There are many people around here who are willing ot help you out! Best of luck in your search! Check here for contact information http://ubpn.org/medicalresources/us-bpi.html

COurt xx

[admin]

Hi Tammy,
My daughter is a patient of Dr Waters in Boston at the Children's Hospital. She has been seeing Dr Waters since she was just about 2 months old. She is now 3. She had secondary surgery with Dr Waters at the age of 2 years and 4 months old. We are scheduled for an MRI in Jan for her one year Post Op scan.
Chidlren's hospital is a great place. Very warming and everyone is personable. The only thing I didn't like throughout my times there was one nurse during her operation stay. It wasn't the end of the world, but she didn't seem to interact well with Ella b/c it seemed like she treated her as an adult would be treated with the way she talked to her, etc. We only had her for about 3 hours and then shifts changed so I was happy about that!
Dr Waters is a great guy. He spends all the time with you that you need in the exam room. He has a great bed side manner with the children and parents. Very easy to talk to and to ask questions to. I feel VERY comfortable around him at all times. Everything that he told us about Ella's injury since 2 months old has been right on target. (Recovery, problems that would linger, surgery, surgery results, etc)
I highly recommend him and the hospital. If you want more info or have any specific questions for me then please feel free to email me anytime. Ldybug4134@aol.com
Good luck to you.
~Krista~

[Tanya in NY]

Hi, Tammy. Welcome to the boards! I'm glad you stumbled upon this site, as I have felt it's been a wealth of information. Don't forget to explore this site more and request to be on the mailing list for the Outreach magazine (there's a link for it on this site). It's a free magazine that has wonderful information from families and providers, too.

My daughter, Amber sees Dr. Scott Kozin at Shriner's Hospital in Philadelphia, PA. We have had nothing but very positive experiences with each visit to Shriner's and Dr. Kozin. Amber saw a more local orthopedic doctor up until this past May, then we found Dr. Kozin when I went to a seminar he was speaking at. Immediately I knew we must switch her care to him. He has a wonderful bedside manner, extremely knowledgable, and he is willing to answer any question you throw his way over and over and over again (as in my case...ha, ha). Amber just has her first surgery ever and we chose Dr. Kozin. Keep in mind that she is only 2, so some things may be different in each of our children's case. She had the anterior capsule release by Dr. Kozin because her shoulder was subluxing (falling out of joint partially) due to a muscle imbalance. The fear was that her shoulder joint would form incorrectly. We in fact go back down to Philadelphia to see him again on Monday to get her cast off and stay for a while to do some therapy. He answered so many questions and was very patient with Amber and her father and I. He emailed me and called me on the phone to answer any of my questions at anytime. When we were ready to leave the recovery room with Amber to go back to the hotel (her surgery was an outpatient one where it used to be an overnight stay), he gave us his cell phone number and personal home number in case we had any questions during the night concerning Amber. I am a nurse and have never met any doctor who gave out their personal number. Usually they have it unlisted so patients can't call them. I just felt very comfortable with him. He tries to make things work for the family and is great with my daughter, as he is with so many other parents. I also cosulted with Dr. Waters in Boston before we finally decided to go ahead with Amber's surgery (multiple opinions are always a great idea). He was very nice as well, although I didn't have as much of an interaction with him.

Ask any questions you can think of here on this forum. There are many adults who suffer from this injury, and many children infant age to almost adults, so we all can pool together and try to help you anyway that we can.

Good luck with your decision.

Happy New Year!

Tanya in NY

[admin]

We see Dr. Nath and absolutely LOVE him! He is nothing but exceptional. He is very easy to reach by phone and e-mail and responds very quickly. He has given my son the world. He has given him so much movement, mobility and range that we NEVER thought possible. He is truly amazing.

[admin]

Louise, we live in TN. The closest clinic to us is in St Louis, MO. But distance isn't really an issue with us. We just want the best care possible for our son. Thank you for you reply. It really helps to know that there are others going through the same things that our family is. I had no idea that there were so many others suffering from a BPI. Tammy

[claudia]

Tammy:
There is a medical resourse page on this website. The doctors have answered a questionaire designed by ubpn.

You did not say where you were located, but all of the doctors mentioned in previous posts, in addition to others not mentioned, accept videos as part of the evaluation process.

Also, if you check the Events Board, one of the doctors might be travelling to your area.

The clinic at Texas Children's is temporarily suspended, but you can call Dr. Shenaq's nurse coordinator, Lisa Thompson 1-888-368-8215 and talk to her.

I have met many of the doctors mentioned, and they are really all out for the benefit of our kids. There are some differences in style, but they are all excellent doctors. If you are on the west coast, I recommend calling Dr. Michael Pearl.

My daughter has had 3 surgeries, all at Texas Children's. I love working with Dr. Shenaq and Lisa.

Good luck, and remember to keep asking questions!

claudia

[Kath]

Tammy

Welcome to the message boards. I am glad you found us. I know what a shock it is to find that this is not a rare injury and that there may be something that can be done to give your child a better range of motion.

It took me 60 years to find others who are injured like me. I thought I had a rare injury. I am right OBPI and was so shocked to meet so many families with injured children. I am of course happy to have met other adults like me who are birth injured. It is great to have others to talk to who truly understand.

We publish Outreach magazine twice a year if you would like to get a copy please email your name and address to Nancy@ubpn.org and she will add you to our mailing list and send you a copy.
Kathleen M
UBPN Secretary