New and Need Help re: My Child/Surgery

[mylilboyblue]

Hi everyone. I am really new to everything BPI. I have an almost 11 month old son who was recently diagnosed with having a Left OBPI. He has been in Early Intervention PT and OT since January. Honestly we had no idea that he had a BPI. We really just thought he had some gross and fine motor delays with his left hand and arm. We were told by our pediatrician that he would grow out of it and we were assured by others that with PT and OT he would be fine. Almost 3 weeks ago we took our son to a Neurodevelopmental pediatrician and BPI came up. I quickly did some research and spoke with some wonderful folks who have dealt with BPI and their child and I came up with Dr. Nath. It just happened that today he had a clinic near my home and we went to see him. He took a look at our baby and said he had a C5 C6 injury and that his shoulder was partially dislocated and that he will need 2 surgeries (Mod Quad and Triangle Tilt) and that we should try to do both of them before he is 18 months to ensure the best recovery. My head was spinning. Now that I have calmed down I am looking to get a second opinion. I really like how many people love and recommend Dr. Nath, but I really feel like I need a confirmation from another specialist saying surgery is necessary before putting my son through it.

I was looking closer to home and saw that Dr. Kozin came up a few times in Shriners in Philly. Does anyone have any experience with him and how long it usually takes to get to see him. If Dr. Nath is correct and time is really of the essence for our kid to regain mobility, then I want to get started as soon as possible.

I just wish I knew what the right answer is and any help would be awesome. Sorry this is so jumbled. My mind is overwhelmed and I am exhausted.

[marleneross]

If you contact Shriners in Philly about a new patient with BPI they will try to get you in as soon as possible, typically within a few weeks.

[mamaofsix]

I am sorry to hear the recent diagnosis for your son, but I am glad you found the site and you are asking great questions. It can definitely be overwhelming at first, we have all been there! It may not seem like it now, but it will get better. My son had primary nerve graft surgery at 3 months old, and it was a very difficult time for our family. He is now 3 and although we are far from being out of the woods, at his point of our journey, we have much more knowledge of the injury, and lots of support from other families, just like us. That truly has made a difference.

It is important to seek second opinions when it comes to surgical intervention for our bpi children. The "right" answer is often challenging. The injury is so complex. Many families on the board have seen Dr. Kozin and are pleased. We have a Medical Directory Resource page under the tab "Resources" that could also be helpful. There are also resources available to assist with travel and lodging for Shriner's too. I would be happy to help you with that information if you would like. I can be contacted at anise@ubpn.org.

Anise

[katep]

Are you sure it is brachial plexus injury? Starting PT at 6 months of age sounds very unusual. Was his disability noticed immediately or did it gradually become obvious that his arm didn't work completely? Was his arm completely paralyzed at birth?

I ask because many times I have seen a late diagnosis turn out to be a misdiagnosis. A BPI is very obvious at the beginning, but can look like other things after a few months. It is really the first weeks and months immediately after birth that are drastically different and indicate the child has a BPI.

Kate

[mylilboyblue]

Hi Kate!

To be honest I am not 100% sure that it is a BPI. I have been told by a Neurodevelopmental Pediatrician and Dr. Nath that it is a BPI. Dr. Nath said it was a C5 and C6 injury so he does have some arm movement.

We didn't notice anything at birth. He was waving his little fists around. But now that I look back at his newborn photos I can see a slight difference in his shoulders and how he held his arms. Anyway, I didn't notice much until he started reaching and grabbing things with his right arm and hand, but his left hand stayed tightly fisted and his arm by his side. He was always tight, guarded with the arm and never really moved it. We went to his doctor and was told that it was probably just a motor delay and to give him some time. He was about 2 months old then. When he really started to move his right arm and hold and grab toys, but the left arm was always tight and fisted I got nervous and called Early Intervention since I was still being told it was just a motor delay. He was evaluated at 4 months and started PT just before 6 months. He has gained some motion in the arm. He can move his arm upwards to around chin level. He cannot supinate the arm and will reach for things with the upper part of his arm presenting. He can't bring his hand to his mouth. He has started rolling but cannot crawl properly since the shoulder doesn't work well. He commando crawls. He is not cruising or walking yet.

Now just this morning I brought him back to his doctor, the one that told us it was just a motor delay at 2 months and now he agrees that it is a BPI. I am pretty upset that something like this has gone undiagnosed until now.

I called Dr. Kozin today and have the ball rolling to get to Shriners. They took my application and I hopefully will get in with them in the next couple weeks. The lady that took my information says it will be sooner rather than later.

The whole point is that I want to be sure of what we are dealing with before we sign up for him to have surgery. KWIM?

[mylilboyblue]

I thought I had replied but now I don't see it.

Anyway a short version in case my other posts show up and both kids are up from naps ....

This is going to sound horrible but I can't really remember him as a newborn and what his hands did. I know both of his hands had that newborn fist and that the right hand stopped doing that early on and he started to move around and grab things. It was around 6-8 weeks old I noticed that his left arm wasn't moving alot. He did some lifting to about chest level, no higher and only up and down. When he was awake the arm was TIGHTLY held to his side, but flexed so his hand was about hip level and the fist was tight. It was sooo hard to pry his hand open to clean it. We mentioned it to the doctor and he said wait and see what he does. When he was almost 3 months old and grabbing with his right hand and holding toys and he wasn't using his left hand and the arm was still tight (though he was lifting it more) I knew something was wrong. We had him eval'd for EI and they approved and started PT and OT at almost 6 months. Here is the thing....up until 2 weeks ago we were told it was probably just a motor delay. His PED didn't seem concerned. He has improved enough that we kept thinking that PT and OT would "cure" him. He can now open his hand and use his arm to a certain point (lifting up a sippy cup using his fist to assist the right hand for example) but he cannot supinate his arm and it turns in the wrong way if he reaches for something. If that makes sense. I am guessing because it wasn't a severe injury it was overlooked? I dunno. I am upset about that. Dr. Nath said it is a C5 C6 injury that is causing the shoulder to dislocate slowly.

Hope that helps...and if my other post come through too sorry for being redundant.

[Cacausey]

I'm new to this too. Our daughter was born in February and was diagnosed immediately following delivery....her injury was very obvious. We've been going to bi-weekly OT since she was 10 days old. We are also seeing the BP team at Cincinnati Children's Hospital. They are wonderful and we really like the team approach they have. I'm not sure where you live but it may be closer than Texas. We live in Alabama so it's quite a long drive, but we'll go to the ends of the earth for our kids right? The number to the brachial plexus clinic in Cincinnati is 513-636-7539. I wish you the best! Lots of love to your sweet baby xoxo

Chris Anne

[gawilliams]

My now 10 month old daughter has ROBPI. We met Dr. Kozin back in December and all I can say is "LOVE him". You can tell he really loves what he does (and his team). His bedside manner is awesome and couldn't ask for anything more? God really created an angel when he created Dr. Kozin. Anyways my daughter has a global injury. He arm, shoulder and hand has no function. Dr. Kozin performed surgery back in January. We just went and had a post surgery check up a couple of weeks ago and she is progressing as suspected. She is starting to get some shoulder in. If you want to know specifics just pm me. I would be more than happy to talk to you.good luck with everything.