United Brachial Plexus Network, Inc.

Hi All,

I have perused this message board and based on the supportive responses I've seen, I was encouraged to post my circumstances. I'm hesitant, because I don't even know if I'm supposed to be here, but will not see my son's doctor for a few days and as you know, once you think something is wrong, it can be an agonizing wait.

Let me start from the beginning. Four months ago my son was born sunny side up in a vaginal delivery. He had difficulty coming out and a vacuum was used. There was no indication that anything was physically wrong with him and I never heard any mention of BPI or the like. He suffers from severe reflux and milk intolerance so the last four months have been spent trying to get him medicated properly as well as finding a formula that he could tolerate. My husband, mother and I have been preoccupied with this as it affected his eating and sleeping. Now that he seems to be settled in that regard, we all noticed, practically simultaneously, that he has a habit of holding his left arm down, with the wrist turned. Of course, I googled it, found BPI, and scheduled an appointment with his pediatrician. In the meantime, I've been reading posts and have not come across an example that seems as mild as what I am observing (and I feel very fortunate that this is the case - my heart goes out to everyone who is dealing with more serious cases). I'm just concerned that if I see my pediatrician and tell her what I'm observing, she'll dismiss it because of all the positives I detail below. So I'm looking for thoughts from those who have been through this.

My son moves both of his arms, though if I had to choose I would say he favors the right arm (the one I am not concerned about). He seems to have full use of the left arm - fingers, wrist, elbow, shoulder - grips my fingers very well with that hand and will wave it around just as much as he does the right arm (he tends to move a lot when he's refluxing). That's the good. The bad - when I change his onesies, he will usually cry when I'm putting his left arm in a sleeve. When he does tummy time, his instinct is to put the left arm down and use the right arm to push up. If I move the left arm into the same position it will stay there, but he is definitely putting pressure/leaning right. He only looks to the right (away from the injured arm) when he's on his stomach and turning his head is hard. For the first few months, he tended to look to the right all the time and we had to work on that to avoid misshaping his head. He doesn't seem to look to the right only when on his back or in a swing anymore but he definitely does it when on his stomach. When I told him, the left arm hangs down while the right one curls around me.

Thoughts? Could this be a mild form of BPI? Should I be prepared to fight the pediatrician on this? What would be the next step - seeing a specialist and if so, does anyone know of one in South Florida (I'm in Miami but will drive north if necessary). I waver between freaking out and thinking that we've done irreparable harm by waiting four months and that this is no big deal. I'm guessing the reality is somewhere in between.

Thank you for letting me get this off my chest. I look forward to any responses.

Hi,

I'm sorry to hear about your son and I hope you get the answers you need so you can start pursuing appropriate treatment. That said, I am 100% positive your son does not have a BPI. While all BPIs are different, there is no injury which would be severe enough to still be showing deficits at 4 months of age which would not have been absolutely, undeniably obvious at birth. I'll explain why.

Brachial plexus injuries come in a range of severity. Sometimes the nerve is just "stung" - local swelling from trauma causes the nerve to temporarily stop transmitting signals. Once the inflammation goes down, nerve function resumes. There is no actual injury to the nerve itself. These injuries heal completely within a few minutes to a few days.

The next level of injury affects the conduction sheath around the nerves, the myelin sheath. These take a little longer to recover - 6-8 weeks but usually fully recover because the inside nerve tissue is unharmed.

Next is an injury severe enough to also damage the interior fibers of the nerve. At this level, the actual nerve fibers (axons) have to regrow from the point of injury, but the connecting tissue of the nerve is still present, so they provide a "guide" for the regrowth of the axons. There is always some loss associated with the nerve regrowth, especially in infants, whose brains are so plastic that the arm not being used for a period of months can result in overall axon loss, so this type of injury never results in 100% recovery. Nerves regrow only 1-2 mm a day so an injury of this level takes months to recover. Local damage in the containing connective tissue can also result in nerve masses forming where the axons grow out of the sheath and create neuromas, which further lessens recovery.

The worst level of injury, with the worst prognosis, is when the connective tissue itself is completely broken. There is nothing to guide the regrowing axons back to their target muscles, and function will not recover without surgically providing a sheath via artifical nerve guide tubes or nerves transplanted from other parts of the body. The transplanted nerves die off, they simply provide a "guide" to aid the regrowth of the damaged nerves. Sometimes the nerve tears out of the spinal cord rather than ripping in half. This is more common with the lower brachial plexus roots, which don't have a strong "anchor" in the spinal cord. There is ongoing research about reinserting these nerves into the spinal cord but so far, the standard approach is to "tap" into other nerves to provide power to the areas previously fed by these avulsed nerves.

While each of these types of nerve injury are very different, the one thing they have in common is that they all look nearly the same for some initial period of time. Thus, a child with just a "stinger" injury to the upper plexus will look pretty much just like a child whose upper plexus roots were torn out of the spine. Both will have arms that appear to be completely paralyzed around the shoulder and upper arm. The difference only shows in when (or if) each child recovers function. It is how and when this recover occurs which gives the most information to doctors about what the extent of the injury is (except in the case of clear avulsions or more severe injuries which sometimes can be seen on MRI). This is the "watch and wait" part of brachial plexus injury that makes this injury so hard for parents.

So all of that is to say... there is simply no way what you are describing with your son is a mild BPI. Because even a mild BPI would have looked severe for a period of time at the beginning (be it minutes or hours in the case of a "stinger" or weeks or months if more damage was sustained). There is no mechanism of injury to the brachial plexus from trauma which would result in persisting deficits at 4 months of age which did not cause complete loss of function for some period of time. It could not have been missed.

Please get your son to see a neurologist. Over the years, many parents have come to this site and told very similar stories and usually the child turned out to have some form of hemiplegic cerebral palsy. One-sided cerebral palsy looks very much like a "mostly recovered" BPI, which is why they are often confused. And it can be just as mild as a mild BPI. But the main difference is that CP only really shows itself as the child starts to do more things with his/her arm, whereas BPI always follows the course described above - most obvious at the very beginning. From your "looking to one side" description, it also could be he has persistent torticollis which could be impacting his development on that side and even possibly causing some discomfort, but I'm not sure if that would be enough to explain everything you describe. I would definitely make your observations known to your pediatrician but more importantly get your child to see a specialist who could diagnose the range of possibilities. A BPI specialist is not called for here. And keep your pediatrician informed... but don't rely on her too much. Pediatricians are by necessity generalists, and I've heard of more than a few who misdiagnosed a child as having brachial plexus injury under circumstances exactly like you describe, and were wrong.

I pray that you get some answers at the upcoming doctor's appointment. Regardless of what is wrong, not knowing is the worst part. Many hugs to your precious baby boy and please let us know what happens.

Kate

Dear Kate: Thank you so much for taking the time to type up all of that information. It surpassed the expectations I had when I posted. You were right, of course. My son will be seeing a neurologist and PT is in his future. We are on our way to figuring out what is wrong. Thanks again.

He could have a broken collarbone! There is something else too that i found when I was googling (like you were) when my daughter was born, but i cannot think of it!! I will keep looking and let you know. Not a brachial plexus injury though. Im guessing broken collarbone!

Bump