*** UPDATE New Here.. 11 week old with Brachia Plexus Palsy

[gawilliams]

Hello,

I have an 11 week old daughter who was born with shoulder dystocia. She has been diagnosed with Brachial Plexus Palsy in the right arm. She currently goes to OT 3x a week. She has seen an orthapedic twice. She has no movement in her arm (biceps or triceps) wrist,hand, fingers. She has gained movement in her shoulder so far. She has been going to therapy for about 6 weeks now. Her pediatrican is very determined to get her any and all the help and referrals she needs. The orthapedic she sees seems very vague. She sees him again in another week. If he does not request an MRI of her neck i am going to have my pediatrician refer us to somewhere else. My question is now that she will soon be 3 months and has no movement of the hand/wrist/or fingers, what are the chances of her needing surgery. Any and all information,including doctors,specialists, and hospitals would be greatly appreciated. Thank you.

***Update*** I have sent my pediatrician Dr. Kozin's information for the referral, hopefully we will hear something back soon. Is there a time difference between me calling to make an appointment or my pediatrican making a referral.

[bfaithda]

I am sorry about your daughters injury, but I am glad you found UBPN. My son had nerve graft surgery when he was 3 months old. He is now 3 years old. When he was born he also had no movement in his left arm. When he was going in for surgery he could shrug his shoulder and that was it. He also had a droopy eye, which is from Horners Syndrome a result to all 5 nerves being affected. He had his 1st surgery in St. Louis. We are currently seeking care in Cinncinati. There are several different places that have Brachial Plexus Clinics. It all depends how far you are willing to travel. If you look here on UBPN under resources then under Medical, and Medical Directory, you will find a list of BPI specialist. Early intervention is key when it comes to theses injuries. I am sure if you have questions about place on here someone can answer your questions. Feel free to email me or you can message me on here if you have any questions. I will be happy to answer any!

bfaithda@yahoo.com

[Tuckersmommy]

Hi there,
All our stories are so similar.In cases like this time is of the essence!!!3 months of age it's time for a pedestrian to make some kind of move.ours referred us to a pediatric nueoroligst...nerve studies were preformed and 2 mri's were given.At 3 months our nueroligst didn't see the improvement that was needed so she sent us to Miami to see dr.Grossman.At 6 months he under went nerve draft surgery.He's doing great now...he's 16 months and crawls and walks and although he's not 100% healed in the right arm he sure is doing a great job trying.....
Hang in there....email me with any questions,I'd be glad to help....YOUR NOT ALONE

[LydiasMommy]

Hi, I am new here as well. I have a 3 month old daughter with Erb's Palsy. I don't really have any answers for you since I am new at this, but I wanted to tell you that I am so sorry this happened to your baby. I know how emotional it can be. If you ever need to talk, feel free to message me!!

[claudia]

To both of you new moms:
I am sorry you had to find us, but I'm glad you did. You definitely need to go to our Medical Resources page. Not only are the doctors and their contact information listed there, but they have completed a questionnaire which will tell you something about their practice.

I also recommend that you get three opinions (at least). Each injury is very, very different. Even if the same nerves are injured, the injury will be different from child to child. Each doctor may have a different view of the injury and how to proceed. Remember that the choice of how to proceed is YOURS. Try not to see a difference in opinion as a bad thing; ask lots of questions and learn from each doctor.

The problem with general orthopedists is that they may not see this injury very often. They may be under the false understanding that "wait and see" is the only way to go. We know that is not true, that time is of the essence, but many doctors do not know that. You need to see a bpi specialist. Even many pediatric neurologists will say "wait and see". Most pediatric neurologists see ADD, Autism, CP, seizure disorders--not bpi. You need to have your child treated by doctors who see bpi all the time.

I know that it is difficult, time consuming and emotionally wrenching to travel all over the country and go to doctor after doctor. However, it is necessary.

I say this from experience. My daughter is now almost 11 years old. She has had 4 surgeries. In those years we have seen 6 different doctors, depending on the issues at hand. We are from the East coast, and have traveled to California to have her evaluated by a doctor there.

As hard as this is for you now, know that over time it will get better. Don't forget to do something for yourself every day. You need to take care of yourself, so you can care for your child.

This board is a vital and wonderful resource, use it!!

good luck,
claudia strobing
ubpn board member

[marleneross]

I am so sorry that you are have to go through this...it breaks my heart every time I see a new mom or dad post.

I think the most important thing right now would be to get in to see several specialists. Dr. Kozin in Philly is great...he typically will want to see you around 6 weeks so he can track progress...if you call they will get you in ASAP. He told us that we no longer need to see any other Neurologist or Orthopedist just him.

My daughter had no movement until about 3 months, it was a little movement but that is all we needed to know that the nerve was not torn. It was a very slow process from 3 months to 6 months to gain bicep movement, but see did just 3 weeks before surgery (right around 6 months). It sounds like the nerves were not torn if she is having movement in the shoulder.

Please let me know if there is anything I can do.

Marlene

[gawilliams]

Thank you everyone for your support. I am going to try to get her in with Dr. Kozin for a first opinion. If anyone else has any other input or words of encouragement, It would be greatly appreciated. Thank you.

[Carolyn J]

BUMPING UP for "mmarieg"
Carolyn J
LOBPI/72++