Hi Kaiden's Mom,
You've come to the right place for support and information, and I hope I can give you a few more options. Feel free to e-mail me if you've got more questions or someone to talk to!
Our son Christopher turned 2 on Jan 1, and the injury was to his left arm/shoulder. (I'm pretty sure he had a c5, c6 and c7 injury). Fortunately, my husband and I are both rightys, so the odds of him being a lefty are slim. He always had motion in his fingers and was able to grasp, although he kept fisting, meaning he held his thumb. Through therapy, this has pretty much disappeared. When he was born, he had absolutely no motion in his arm. We started OT pretty much when he was about 2 weeks old and have been going since.
Christopher has problems reaching to the top back portion of his head, to the back (external rotation) and he keeps his arm out when he uses his hand to feed, which we're still working on.
I'll start with the history...
Although Nath is extremely popular for his BPI work, we had heard mixed reviews, from people on here, and from the other doctors we saw, and we decided to rule him out.
Originally, Christopher was scheduled for primary nerve surgery with Dr. Grossman/Price in NYC, but something sent a red flag to both my husband and I and that's what started our East Coast tour of doctors. We both felt that he was going to go in there, and do nerve transplants whether he needed it or not, and that didn't sit well with us. We saw Dr. Peter Waters at Boston Children's who we liked and said to do nerve surgery on him was a big mistake, especially since he's got movement in his fingers. His approach was to do aggressive OT and PT and he would re-evaluate him around 2 years to see if he would need surgery. (He was also very adamant about not having nerve surgery that he was going to write to Grossman to understand why he thought Christopher would need transplants, which we thought was interesting, and alarming that one doctor would advise another not to do a surgery.) My husband and I thought 2 years was an eternity away at that point, so we went to see Dr. Alan Belzberg out of Johns Hopkins. Dr. Belzberg is a neurosurgeon where Dr. Kozin, Dr. Waters, Dr. Nath are all orthopedic/plastic surgeons. We felt that if a nerve specialist said the baby would need nerve transplants, then it was inevitable. He was very patient with us and sat and watched Christopher for over 2 hours, answering each and every question, concern, worries we had, and he had a game plan, if this didn't work, then we'd go to plan b, and if that didn't work, plan c, etc. In fact, he's still tracking his progress presently. Dr. Belzberg also felt that since he had movement in his fingers, that nerve surgery was out of the question. He said that there was a "cookie test" out of Toronto to verify nerve surgery, and that if Christopher passed it, then he was out of the woods as far as nerve surgery went. He suggested botoxing the strong muscles to give the weakened ones a chance, and whether it was coincidence or it actually helped, we avoided nerve surgery, but we weren't out of the woods yet.
Christopher's shoulder was subluxed, meaning it wasn't fitting into the socket properly, and was pretty bad from what we saw on the MRI's. Again, we went back to Waters, Belzberg's plastic surgeon, Dr. Bruchart, and Kozin, based on suggestions from Belzberg. Again, Waters wanted to wait as did Bruchart. When we saw Kozin, a couple of things came into play. One, it was free because it's at a Shriner's hospital, two, he is the closest to us in Philly, we're in NJ, so if after the surgery we needed something, we could make it in a drive, and 3, based on Christopher's MRI, he felt that it wasn't going to get better, no matter how much therapy we did, and that why should we wait, which is what we were thinking, so we went with Kozin, who also spends a lot of time with you answering all questions and concerns, and he wants your kid to be as perfect as possible.
So in August, Christopher had an ACR - anterior capsule release. They made an incision in the front to loosen up the tight muscle, and tighten the weaker one to put his shoulder back into socket so to speak. He was in a body cast for about 4 weeks, and once he took this off, he raised his arm higher than we've ever seen, although still not totally upright.
At the 6 week follow-up appointment, Kozin felt that Christopher was still tight and didn't want to lose any benefit of the surgery, so he suggested we botox him again, which we did. It took about 3 weeks to kick in, and we see a little weakness in the shoulder, but our therapist sees improvement.
You have to be patient, because the improvements are slow. Although he's still not reaching up straight, he can reach the top of his head when bribed with putting food on his head, like cheese doodles or m&m's which we do as part as therapy. His external rotation is getting a little better as well.
We've been fortunate to have found an OT that specializes in Erb's Palsy and has a great rapport with Dr. Kozin, that if she has any questions as to why he's doing something, or she has a suggestion, they're both on the same page. I'd be happy to give you her information if you'd like to e-mail her or speak with her for suggestions.
We go back to see Dr. Kozin on the 16th and we'll see what he thinks. If he feels he's still tight, we may do another round of botox, and if that doesn't work, then we're looking at muscle and tendon transfers, which we're hoping and praying to avoid, but as you know, you only want the best for your child.
As far as therapy goes, I think it was somewhere around 21 months that we scaled back from OT/PT 3x a week to one time. We qualified for Early Intervention, which is state sponsored therapy. I know NJ and NY participate in it, but not sure about other states.
If you looked at him, you'd never know he was injured. He's very symmetrical which we're lucky for. He doesn't really have a drooping left shoulder, and his muscles are pretty even. He did/does wear an arm brace at night to keep him from bending his arm, which affects his shoulder.
A lot of what I do with Christopher, is give him stuff to reach up to, like a magnetic easel, we do head shoulders knees and toes, I stretch him, but I think the key is to let them to most of the work. That's how the muscles strengthen.
Christopher was very delayed in crawling and walking, and they said the injury can cause this, because he needs to push himself, and he couldn't do it with his left side. He started to walk around 20 months or so, and has been running everywhere since
Our next concern is his speech because my daughter was speaking in complete sentences by 2, and my son is now just starting to say a few words, so we had a speech evaluation, and they suggested we do it once a week, but I think in a few months, we won't be able to keep him quiet!
I hope I've shed a little light on things, but if you have additional questions or worries or just need another mom that's gone through this, please don't hesitate to contact me. I'm happy to help
I also have a video, of before Kozin's surgery and after if you'd like to see. Just e-mail me and I'd be happy to send it.
Adrienne