United Brachial Plexus Network, Inc.

How does a neurologist assess and determine nerve damage? Is it simply by having the child reach in several directions or is there a more specific testing method/device to determine the actual nerve that is affected?

Hi there, how old is you baby? We went to a neurologist who was supposedly experienced in BPIs he had this wait and see attitude, so we waited and waited. Aaron did make improvements but not to my satisfaction. So that is when I decided to contact TCH. We got an appointment set up and he had surgery on the 12th. The neurologist said that surgery was not needed "at that time" I wish I would've contacted TCH earlier though cause his recovery percentage would have been higher. He will be 80-85% recovered with this surgery and then will need the mod quad in December and that will bring him up to 90% or hopefully 95%. Aaron was 11 days from being 10 mos old at the time of surgery and IF you elect to do surgery it needs to be done by 6-7 mos for a better recovery rate. That is what I was told by Dr. Laurent. Just my opinion. Good Luck
Paula

(Just going by our experience with the docs at TCH...)

Some doctors use movement alone as their means of determining what the injury is because there are landmarks in terms of the movement/months post injury - because nerves grow back at a rate of approximately 1 " a month. They look for biceps at around age 4-6 months.

But if a child is on the cusp and they can't really tell by the movement, then they will do an EMG.

have you seen this page?
go to the home page- http://ubpn.org and click on the button on the right side - INFORMATION FOR NEW PARENTS- there's a good explanation of time frames there.

I thought I would share the evaluation system we have in England with you.
Most Children will be referred ( Hoopefully!) to a BPI specialist for around their 3 month age.
Most BPI specialists use a scoring system - one in particular uses criteria by Michelow and Clarke, the baby is scored for the movements it has regained and based on this evaluation the treatment plan is formulated. This may include EMG or MRI testing, although that is certainly not routine over here.
The specialist generally uses his clinical opinion based on may years experience of this injury.
If the child has a borderline score the child is re-assessed after a month.
Over here, the specialists are looking for biceps activity at around 3 months. But remember, surgery will generally take longer to schedule over here as it is all provided free of charge, and waiting lists are slightly longer, so a child would usually be around 4 months when scheduled for surgery any way.
Children are always re-assessed prior to surgery, and when they are showing signs of recovery on their own, then of course the scheduled surgery would be cancelled.
I wish you and your family well, and thank you for taking the time to read this post about life on the other side of the pond.
kindest regards
Karen Hillyer

Karen - well you are pretty lucky over there. Here this injury is still on the hush hush - many doctors don't want to admit there's an injury and many pediatricians, neurologists and even the newly named bpi specialists in all the newly formed clinics don't know enough about it.

It's quite upsetting - especially for a parent who has been told for a year (or years) to wait and see...or if the specialist tells the parents that he is "conservative" (as though this is a good thing when it comes to primary) and then they realize that their child's injury is pretty severe and then they're at that point where primary surgery may not even help.

We went to our city's childrens hospital which is rated as the #1 childrens hospital in the NATION(!) and the neurologist (a so-called bpi specialist) didn't even advise us to go to therapy - nor were we instructed on how to do ROM's. And then when it was very evident that Maia was not meeting the movement milestones he berated us for wanting to go to a (real) specialist - saying that any surgery would just make her worse.

This is a major part of why this website is SO important and why so much emphasis on here is to inform parents about timeframes, options, etc.

I guess this turned into a vent. Again - I'm glad that you system works so well in informing parents and evaluating the babies in the time frames that they should be evaluated.

-francine

Michelow and Clarke ROCK

Francine
thanks for your comments about us being lucky over here in the UK - it's quite funny really, that you think that, as many many of our families over here often ask me if they would be better served by taking their babies over to the States for treatment - I really don't think they believe me when I tell them that we can treat the babies just as well over here. We are so used to believing that the UK is years behind with technology and progress that for us to be proficient at something seems odd!

There are still quite a few provincial Doctors who adopt the wait and see approach over here too, but fortunately most physiotherapists will tell the parents about our group, and of course when they contact us, we tell them about the various treatment options available.

Within our group, our policy has always been to advise parents to see one of the BPI specialists, even where the baby is making good progress - we feel that it has a re-assuring effect on the parents, I am sure you have found that too. I always say to the parents that the Doctors need to see the babies who are recovering well, as much as those whose recovery is slower, that way when they do see more severely injured babies, they have something to compare them too.
One big difference between our countries is they provision of physical therapy. Over here a family would be very lucky to see a physiotherapist once per week, usually it would be once every two weeks and as the baby gets older once per month gradually going down to every 6 months before discharge. The physio would instruct the parents in ROM and then leave it up to the parents to do the majority of the therapy with baby.We do find this aspect very frustrating indeed and many parents opt to pay for a private therapist, but then of course it's often difficult to find a private therapist who is really experienced in BPI.
It's a bit of a vicious circle really.
If we could combine your therapy sessions with our time scales and evaluations we'd have a perfect system!!
Sending greetings to all our families
Karen