Questions, questions, questions....

[Athanys Hope]

Hi All! Well I've been out of touch for a while. It's been a roller coaster for sure. My son Athany (ROBPI) is 6 years old and has had an “AR” & tendon transfer in 10/2009. He seemed to do great afterwards and has made tremendous gains. But recently, I've noticed that his right shoulder is coming down a lot, he has a bone that is poking out of the top of his shoulder that was not ever as prominent as it is now, he is always holding his arm at a 90 degree angle by his side/slightly to the front of him. He can lower it a little if qued but it always end up in the same position, even when he is sleeping he holds it there. We are terrified that he may be dislocated again. If I put his shoulder into the position that "feels" right to me (In comparison to his left arm) it looks as if he is back in his post surgery splint (Statue of Liberty pose). Is this normal? His therapist haven’t really mentioned anything and the doctors he sees here do not know enough about BPI's or the types of surgery he has had to say. We see Dr. Kozin but are all the way in Florida. I'm not sure if this is what to be expected or if there is something wrong. Any advice would help. Thanks Daisy.

[F-Litz]

Hi Daisy -- take a short video showing all of your concerns and email it to the doctor who did the last surgery. Sounds like there is something going on for sure. Hoping for the best,
francine

[Ifihad1wish]

My son had an ACR on his left shoulder and I am noticing the same issue. His left shoulder is droopy also. I made an appointment for my son to get an MRI in August to see if his bone is out of socket again. I am praying its not. He also holds his arm at a 90 degree angle also. His functio is good but I do not like him holding his arm like its in a cast. I also do not like the droopy shoulder. Does anyone else have this problem? If so, how can it be fixed?

[KPC's mom]

To Ifihad1wish,
I think my son had surgery on that same day at Shriners. I know Dr Kozin did several ACR's that day. I'm also noticing the same thing with my son, Kaiden. He has good function, but doesn't use his arm as much and usually holds it bent. He can get his arm up over his head, but it's bent at the elbow when he does it. We have an appointment to see Dr. Kozin in August. Kaiden's shoulder seems to be coming forward, but it also looked like that last year when we saw Dr. Kozin. I'm not sure it's its moved anymore. He had an MRI last summer and the bone was still in the socket, but boy did it look weird compared to the right shoulder. We got a copy of the MRI on CD to look at the pics.

We also saw Dr Nath last summer. He recommended that we to the mod quad & the TT. Dr. Kozin didn't agree that these should be done due to the potential for loss of function. We couldn't afford to pay for the surgeries with Dr. Nath as it was going to be $30,000 out of pocket after insurance (he doesn't participate with our insurance & for out of network, you have to pay whatever the insurance doesn't).

[bpiparent]

Hello,

If your insurance will pay for it and you are close there is a Dr in Jacksonville at nemours. My daughter had her first surgery at 4 months and I saw many Dr's because I was concerned about who could do the surgery. I had already set up the surgery in Jacksonville and wanted another opinion. I met with Dr Kozen who knew Dr. Murray from Jacksonville and gave him a glowing recommendation. My suggestion is that if going to PA right now is too much and a video might not convey everything you want to address, get an opinion from Dr. Murray and ask him to communicate with Dr. Kozen. Dr. Murray is a very nice man, but he only sees patients at Nemours once a month so you may need to wait 2 months to see him.

Hope this gives you another option. I travel to PA from FL every couple of months and it is expensive.