United Brachial Plexus Network, Inc.

I'm hoping someone might have encouraging stories for us. Joshua is 8 months old tomorrow, and has good bicep recovery so his doctors are not recommending primary surgery. However, he still has absolutely zero abduction or deltoids working.

Has anyone else had recovery of deltoids as late or later than this? I'm so worried! I already know he's likely to require secondary surgery, but even secondary surgery only enables abduction, it doesn't "create it" from nothing! (The muscles have to be connected, and just work better after release of contractures.) But if Joshua doesn't have any of these muscles working AT ALL, then what?

Has anyone's child had practically no abduction and had late recovery, or still had good results from secondary surgery?

Please, I need to hear there is still hope!

Kate

I'm sorry to hear this Kate. Is it at all possible that his biceps are much stronger? Could Botox be helpful? Is there any research on the possible benefit of primary even with return of biceps?

I hope you others will post with postiive experiences. Maybe you could email this question to Dr. Waters?

Please keep us updated.

Michelle

Michelle,

I think you are thinking of triceps/biceps? Joshua can raise his arm to the front, but not the side. He can't move his arm out to the side at all, even internally rotated. He might had an adduction contracture (holding his arm down to the side) but I think he's pretty loose. His passive abduction ROM is good (I'm pretty sure?!). It's possible that botox in the adductors might help, I guess. Has anyone had this done?

I did email Dr. Waters, who said that we should keep an eye on him and that nerve transfers might still be an option within the first year if the deltoids don't come in. He said there are no good secondary muscle transfers for abduction if the delts aren't working at all.

My understanding is that secondary surgery helps abduction by releasing contractures and putting the arm in a more neutral/external rotation, thus allowing the existing abductors to work. But actual muscle transfers for abduction aren't that common or that great - such as trapezius to deltoid insertion, which isn't that effective and leaves the child with a "webbed neck" appearance

We have an appointment with Dr. Stevonavic in Los Angeles next month, and will discuss options then if the still doesn't have any deltoids. I just pray there is still hope for these muscles...

Kate

My son had no abduction or deltoid until well after 8 months. There is still hope for your son. I was really worried about my son's deltoid at about the time he was 8 months old, too. If I remember correctly, his deltoid and abduction started coming in at closer to 11 or 12 months. We work with a BPI OT with over 30 years experience in BPI alone and she told us she often sees deltoid and abduction as one of the last movements to come in and it is a lot of time much later than 8 months of age. I hope this helps.

Guest - I hope you and your therapist are right and there is still hope for Joshua's deltoids and abduction. I watch him constantly, and he uses his his arm so much, even with its limited ability, and yet there is so much he just can't begin to do without this!

Kate

Boy Kate I wish I could give you some answers, but you are so much more on the ball than I was when Caitlin was at that age...I can't recall what she had/didn't have any more. I tried going back to some of her reports and couldn't get a good read. Maybe I'll try video. All I saw in the report was after she had the mod quad, her neurologist report stated improved deltoid abduction. I can't for the life of me find out where it was before then. Unfortunately, we didn't start OT until she was 13 months. We get reports from her every 6 months but the PT who we saw exclusively before that didn't give us regular reports.

I checked her surgery records from TCH and she didn't have trapezius transfers either.

My recollection was that her abduction was fairly lousy. I remember her always bending her elbow to lift things, and never really getting it up to 90. I think I saw at some place it was 70, but that would've been around 2 years of age. She was splinted at 120, and now goes even further than that. (she does a pretty good jumping jack) I just don't know when deltoids came in though.

Lisa

Hi Kate.

Even after secondary surgery, Sarah still has problems with abduction. We've been told by several different doctors that most BPI kids abduction problems have to do with a tightness in the Supraspinatus and Infraspinatus, as well as weakened deltoids, as well as tightness in the pec muscles.

Sarah did not have ANY abduction before her surgery, so it did address some of the issues, but it's something we still struggle with even now.

Sorry I can't be more promising, but just thought I could shed some light on the problem.

Cherie and Sarah

Kate,

I knew you understood the mechanics of it better than I do. It would be interesting to see if anyone has ever attempted to botox to adductors, if that's even possible. The good thing is that he still has time and alot can happen in the next 4 months. Jessica got the most noticeable recovery from 9 to 12 months. I pray Douglas's abductors will kick in soon.

By the way, did you ever (or do you think it would be beneficial) to have an EMG done? I know that early EMGS are unnecessary and poor indicators of what return the child will have, but perhaps at this stage it would show what innervation there is in the deltoid, and if perhaps the nerve is torn, earlier intervention would yield better long-term results? Or can MRI show the extent of injury to the nerve?


Michelle

My baby had zero deltoid/abduction activity at 15 months. I mean NOTHING, not even a slight flicker. We had mod quad at 18 months and BAM, there it was only about a month post op. This was not the reason we chose mod quad surgery, my baby couldn't reach as high as we wanted, but what a great bonus, right!!!!!! Never lose hope!!

Kate,
Sorry to hear about this problem b/c I know Joshua has been recovering very well for the past several months. Don't get yourself crazy yet b/c there is time to see more improvement. Mariella gained so much improvement with EVERYTHING during her first year and up until she was almost 2 years old. This included abduction. HEr abduction was never great and still isn't perfect, but give it time and I believe you will see it. I think Joshua has recovered so well that this will happen in the near future (maybe not a lot, but I think you will see more deltoids) and I don't see him having nerve surgery. I know, I don't have a crystal ball, but I honestly think things will be okay for you guys. Good luck.
Krista