So confused

[StaceyC]

Hello everyone. My name is Stacey and my daughter Rowan has LOBPI. She is now 3 months old. She seems to be doing pretty well...she began to get anti-gravity biceps function back at 10 weeks and it keeps getting stronger and stronger. At first, I thought that meant she would recover fully. I had read that the presence of biceps function at 3 months indicated a full recovery.

But then on the TCH website it says that 95% of children with any deficit at 3 months will have significant functional deficits at 5 years. She is still a little internally rotated...when her arm is at her side, her thumb points to her thigh rather than forward. She lifts her arm to about 120 degrees when sitting up and 180 lying down. Is there anything I can do? What is different about the 5% who don't have deficits at 5 years? Can I make sure she is one of them? Does anyone know about Botox therapy? Would that help the internal rotation?

I know everyone's injury is different and we cannot compare our children. But, I also know some of you have been dealing with these injuries for much longer than I have. I would appreciate any knowledge you can share with me.

I am constantly in a state of mild panic regarding her arm. Tears are never very far away. This is not the way I imagined I would spend my days as a mother. Does it ever stop hurting so much? Thank you all for any help you can give me.

[4Jake]

It is understandable what you are going through as my son is 3 months old also and has a left obpi. He is scheduled for surgery in Feb. at TCH. First know that you are better off than many of us. Second has she been evaluated by a specialist. Is she in therapy. It sounds like it since you have all the terminology down. You are doing the right things by researching and asking questions. Our feelings are to do the right things as far as his therapy and surgery and how his arm ends is how it ends up. I will love and support him in every way possible. I feel like my wife is haveing more guilt type feelings than I am and have told her it isn't her fault. I guess my advice is to not take short cuts.

[admin]

Hi. We were also told that our daughter would have a full recovery but at age two she has just come back from TCH having the mod-quad for her right obpi. We couldn't find a doctor in our state who knew enough about her injury to help her and we have had her in therapy since 3 weeks old, our therapist also was at a loss for a surgeon to help. We went to see Dr. Nath and he said her arm was dislocated at the shoulder, which U.C.L.A, and Loma Linda both managed to miss, this required the mod-quad to bring the shoulder back into place. Now we are even looking at more surgeries since her hand still looks a little crooked. I am not trying to scare you but seeing a specialist is the most important thing you can do, besides going to therapy at least once a week. And about the anger and sadness and crying, my whole family goes through all of those emotions daily, watching our baby struggle. I especially do! Just know there is hope and things will be o.k. no matter what the outcome, because we are all lucky to have these beautiful children and they will learn to use their arms however they need to! Hope this helps and wasnt too long, Jennifer Bobbi's mom.

[francine]

Stacey - Please know in advance that I am not trying to minimize your emotions or thoughts in any way.

Biceps without the assistance of gravity at 10 weeks is a really good recovery. But what that tells you is that there was a stretch injury..and most likely a more serious stretch injury..a less serious one would have recovered sooner. There are stretch injuries in which just the sheath that covers the nerve fibers is stretched and there is full recovery. Then there is a stretch injury where not only is the sheath stretched but the nerve fibers themselves are stretched.

This being said - a stretch injury is still on the good side of things.

HOWEVER you have to do therapy and you have to keep on getting assessed every so often by a bpi specialist to make sure that things are going in the right direction and nothing is tightening up. Even if your child gets discharged from therapy at one point - you may have to return at a later date. Kids grow, things change, muscles tighten. You just have to keep your eyes open - probably until your child is done growing.

I think that with any child who has a bpi, it's most important for them to stay active. Your little one is only 3 months old - so right now you're thinking about weight bearing. Then you'll be doing crawling and more weight bearing. It'll be good to probably join a little kids music or gym program. Then as she gets older swimming class, kiddie yoga, karate, drumming lessons - you name it - do all the things that will keep her arm moving and exercised.

It's possible that she will need some releases later on if things tighten up and if there are muscle imbalances. There are many children that didn't have primary that needed some help later on when things tightened up. Sometimes they can be avoided with good PT/OT - myofascial release - good stretching and other stregthening exercises and alternative modalities like acupuncture, massage, reflexology,chiropractic, etc. Sometimes the imbalance is such that you need surgical intervention.

I know this is all so scary for you and I feel for you. Even if your child does need muscle releases in the future, we'll still be here to help support you through it and the doctors out there are getting pretty experienced and expert at this so it's not as risky as it once was.

Kiss your little Rowan from me and you tell her we say "You Go Girl!!" Mommy needs to stop panicking so that she can enjoy this wonderful magical time with Rowan. And yes - it will stop hurting (as much) - when you see little Rowan doing more and more and more and more and having fun running around giggling and acting like any other kid!

big hugs,
francine

[m&mmom]

Stacey,
From our personal experience with alternative treatments I would recommend trying acupuncture if you're for it. We saw excellent results with Matthew. He had no finger/wrist movement until we started. The docs said that they have never seen a child with that much scar tissue be able to move anything at all. For internal rotation I would try mfr, chiropractic, etc. We've just started seeing a reflexologist and have seen great results from her as well.

I hear what you are saying about the five year age mark. Melanie recovered fully at 9 weeks and I still worry about her. We are going to have her checked between ages 4-6 periodically to be on the safe side. Considering her younger brother is still in the recovery stage we can probably have her seen with him at his appointments, talk about convenience, LOL.
Cindy

[admin]

Good therapy by an experienced therapist and continued work at home, especially range of motion would be very important for quite a while to come. Also, be sure your child is seen by a BPI specialist, regardless of what local docs or pediatricians say. Internal rotation is something that needs to be watched.