United Brachial Plexus Network, Inc.

Hi i'm Nikki. My 3rd child's delivery didn't go as expected and he ended up with BPI. His name is Robert, we call him Bobby. When he was born they did xrays and determined that it was BPI and that we needed to watch is improvements, if any. Up until 3 months he didn't use his right arm at all. He did move his fingers and writst, which we were told was a good sign. We went to PT weekly. We also went to Childrens Memorial in Chicago to see a BP dr and she told us she expects a full recovery. 3 months he started using his biceps. As the months went on, improvements did continue. He would raise his shoulder higher and higher. Now at the age of 21 months, he can raise his arm over his shoulder. He uses his arm alot and he is a very active little boy. We are worried because he still can't rotate that arm. We are very blessed that he is with us, but we are wondering by what age should his rotation come into play? Any advice would be great. Thank you!

Do you mean supination when you say rotation? Just curious. My son didn't gain supination until arond 3 years old (he had the nerve surgery at 3-1/2 mos. old). He can get to almost neutral (at 3-1/2 now), which his BP Team says is pretty good. We used a supination strap on him for a long time and found that it was able to place him at neutral, which seemed pretty functional. We really liked it. It attached to a benik thumb support. If your son can't get to neutral then I would suggest asking the team or his therapist about it. My son wasn't able to wear it with his wrist splint so we had to stop using it though.

My son also had delayed recognition with Lefty! He didn't start using or even really know of it's existence until he was 21 mos old (2 mos. after his muscle/tendon surgery). The first thing he tried to do was reach for my coffee cup! Before that though it was just like he was a one-armed kid in his mind. He did hate ROM exercises, but other than that would'n't even acknowledge Lefty's existence. When he finally realized it was there and that he could attempt to do things with it, we started 2 rounds of modified constraint-induced therapy, which benefited him quite a bit.

Thanks for your reply. It's great to talk with others with similar circumstances. Yes, supination. He uses his R arm in his daily tasks, but no supination. Dr says should come around by 3 years of age. I don't know if we should see any dr's or not. We had seen a specialist when he was just a couple weeks ago and she said she expects a full recovery and his primary said the same thing. What do you mean when you say your son can get to neutral, what is neutral?

I see a lot of people who go to drs. When we went, our dr's say he doesn't need to see anyone. So it concerns me if I should see someone or not.

My son holds his R arm different then left. When he holds a cup his R arm/elbow is out when the L side is down like normal.

Hi Nikki,

My name is Janna and I also have a 21 month old with RBPI. We have seen seen a specialist in the Houston area since Ethan was 3 months old and have had physical therapy as well. From the sound of it, Ethan and your son are about the same as far as their recovery. 6 months ago, we were encouraged to get an MRI to see Ethan's progress or lack there of. We just returned from the specialist today and was told that on May 5th, he is scheduled for surgery.

We have gone thru our fair share of doctors (and thats putting it lightly). Most of them wanted to jump at surgery but my husband and I were confident we could do it with therapy. Ethan does not supinate and most doctors will tell you that it should be reached by 15 months (give or take). Ethan keeps his right elbow up when drinking or eating, but just the same, he uses it EVERYDAY for everyday activities.

I was very confident in his recovery but as we are finding out, it is starting to affect his bones, which if not treated, they will never reach their highest potential recovery. Putting in my terms the ball of his shoulder is sliding back which means his scapula is overcompensating for his movement. So while we think he is doing wonderful, his bones are becoming deformed. The socket that the ball fits in (again, my terms is no longer round and is starting to create a small pocket just where contact is.

The surgery will cut some of the tissue that is tight in his shoulder so that it allows him to start using the front part of his shoulder. He will be in a cast for about 3-4 weeks and then it will double as a splint that he will wear at night. We are starting small and working our way from there. He will need intense therapy after the surgery but we are confident that we will see improvement in his supination and external rotation.

I tell you this not to scare, promise. Ethan was my first and honestly the doctors really never told us what was wrong with him....told us it was like a stinger you get in football, Ethan would recover in 2-4 weeks. 3 months later, we knew something was seriously wrong. I was terrified and had no idea where to turn. Luckily, I found these guys on UBPN. I am mainly a "reader" but its good to come to play where others are fighting for their kids the way you are.

It never hurts to see a doctor, always trust your instinct, and get lots of opinions. Ultimately, it is your families decision.

Sorry for the vent, this is actually my first time on here in probably 6 months but after hearing the news today, I knew there was not better place to turn for support, even if i am just a "reader"

Please let me know if you have any other questions, like I said, I think Ethan and your son are right at the same stage of recovery.

Best Wishes,
Janna

Janna,
We are a Family on here who walk along with you in this "OBPI Journey". This is a good place to Rant and is instantaneously inderstood. It is also true that "there is no such thing as a Dumb question only the one that is never asked" We all continue to learn from each other no matter what. I still do.
HUGGZ,
Carolyn J
LOBPI/72+++

Hello,
My Marissa is 6 years old and we got to Nemours yearly. She has been going since she was two weeks old. Marissa's wrist rotation is off and when she raises her hand it is always bent. She tries to straighten it but it is very difficult. Make sure that you get him a specialist to go to. Marissa used to go every three months. She had OT every week until she turned a year old. The best thing is exercise, exercise, and exercise. She has been in gymnastics since she was 3 for the sole purpose of strengthening the arm. Exercise is the best thing. Ethan will be like Marissa and not let it slow him down not one bit. Keep in touch and good luck.
The Green Family

Does he still go to OT/PT? They have things called Supination Straps that you can put on your kiddo daily to give him better supination (even though he couldn't do it himself yet). Our son can get a little past neutral now, but that just started around 3 years old (we encourage him to make a "thumbs up!" gesture all the time). Before that, he wore the supination strap every day. It really did help his arm be more functional. I'm not sure how to post pics on here, but I can email you a picture of what it looked like. There is also kinesiotaping that can be done to help with it among other things. An OT can really help come up with ideas and ways to help Bobby, working with him and having you do things at home with him.

I've HEARD that most centers are happy when a child can get to neutral because it's at least functional that way.
It sounds like your child also "trumpets" (when putting his hand to his mouth). I'd encourage you to find a BP Centers because there are things that can help with that.
My son still trumpets (not as bad as some kiddos I've seen pictures of) because he can't supinate all the way. He can bring his hand to his mouth without having to supinate, by raising his elbow high into the air... our kiddos are smart and tricky, aren't they? He did have the muscle transfer and tendon releases surgery done (which gave him more ROM) and so we think he still does it because his muscle memory thinks that is the only way for him to reach his hand to his mouth! So we work with him on that.

There are some great BP Centers. I've heard good things about Chicago's. We go to Cincinnati's BP Center and love them. I'm not sure who you are closest to, but it sounds like it might be a good idea to have him be seen by one again. The best thing they can say is that they don't need to see Bobby for another year and to keep up what you are doing. It can be so nice to have a team looking out for him and keeping track of him so they can provide you with input as you care for your baby and refer you to an OT! I know that there are some places you can self-refer your son too (we did that for Cincy), so you don't always need to go through your doctor (but I'd check with your insurance company first).