I've been reading the boards, and I see quite a few "lost souls". We've all been there at one point or another, and I thought I would post what we've found so far, as a starting point for some of the newer members, and for some of you with questions about where to go.
I've posted this before under other topics, but thought, if I can help just one family, then it was all worth it
Here goes...
My son Christopher, was born 1/1/06, so he just turned 2. He was stuck during delivery, and was pulled on to get him out, which led to his injury to his left arm/shoulder. (I'm pretty sure he had a c5, c6 and c7 injury). Fortunately, my husband and I are both righties, 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 currently has problems reaching to the top back portion of his head, to the back (external rotation) and he keeps his arm perpendicular to the floor when he uses his hand to feed, which we're still working on.
Now, here's the research...
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. (Not that he's a bad surgeon, just not for us.)
Originally, Christopher was scheduled for primary nerve surgery with Dr. Grossman/Dr. Andrew 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. Plus, he doesn't accept insurance, and will spend all of 5 minutes with you when you schedule an appointment with him. He is based out of Miami, but does quite a bit of work in NYC.
We then saw Dr. Peter Waters at Boston Children's who we liked and he said to do nerve surgery on him was a big mistake, especially since he's got movement in his fingers. Water's approach was to do aggressive OT and PT and he would re-evaluate him around 2 years to see if he would need other surgery, not primary. (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. Grossman/Dr. Price, Dr. Kozin, Dr. Waters and Dr. Nath are all orthopedic/plastic surgeons. He also has a team of an orthopedic surgon (Dr. Crawford) and a plastic surgeon (Dr. Redett). We felt that if a nerve specialist said Christopher would need primary nerve surgery, then it was inevitable. What we liked about Dr. Belzberg was that he was very patient with us and sat and observed Christopher for over 2 hours, answering each and every question, concern, worries we had. He also 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 research from Toronto to verify nerve surgery, and that if Christopher passed it, then he was out of the woods as far as primary 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 primary 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. Redett, and Dr. Scott Kozin, based on suggestions from Belzberg. Again, Waters wanted to wait as did Redett.
We then saw Dr. Kozin who is out of Shriner's in Philly. A couple of things came into play in our decision to use him.
One, it was free because it's at a Shriner's hospital, two, he is the closest to us in Philly, we're in northern 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 his shoulder 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, which is why 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/Brachial plexus injuries 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 her information out if you'd like to speak with her for suggestions/guidance.
We go back to see Dr. Kozin next week 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 you only want the best for your child and will do what it takes.
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 look at Christopher, you'd never know he was injured. He's very symmetrical which we're lucky. 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 the kids do 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 Christopher is now just starting to say a few words, so we had a speech evaluation done through early intervention, 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 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.
I hope I've shed a little light on things, but if anyone has additional questions or worries or just need another mom that's gone through this to talk to, please don't hesitate to contact me. I'm happy to help.
You've come to the right place for support and information, and I hope I've given a little guidance or thoughts. Again, feel free to e-mail me if you've got more questions or someone to talk to!
Adrienne
