Nerve Conduction Study

[NiteNicole]

Some of you may remember that I've posted before about my daughter and her limping, then getting a sort of tentative diagnosis of "some form of dystonia." Her MRI was clear, her blood tests are good, and now the genetic testing has come back negative.

We took her to another physical therapist yesterday who spent AGES with her, really spent more time and did more with her than anyone else had. Her neurologist had encouraged us to see a PT because he says they see all kinds of movement disorders and may have some more thoughts on what's going on. Well the PT yesterday asked if she has had a nerve conduction study because to him, it does not present like any dystonia he's seen in twenty years (much of it in peds) and it looks like a pinched nerve in her hip. As he explained it and demonstrated some things, it makes at least as much sense (if not more) as dystonia - of course and impinged nerve is something they could FIX. I'm trying really hard not to get too invested in this new idea, but that would be great.

I am going to bring this up with her neurologist in two weeks. I'd like to know if anyone has had a nerve conduction study on a small child (my daughter just turned four in Jan) and if they do it with sedation? My mother has had them done a few times and I know what happens, I can not imagine my daughter getting through it without freaking out. I would think we would have to literally hold her down. The sedation for the MRI was bad but she got over it really quickly and was asking to go to lunch an the park within about an hour. She didn't have any after-effects, didn't even take a nap. She just shook it off and kept going and she doesn't remember it. I don't like the idea of having her sedated, but I REALLY don't like the idea of having to hold her down while strangers do something pretty scary.

Any experience with this? Or impinged nerves?

[MotherWhimsey]

Well, here's my experience with the nerve conduction testing. Linden had it done to see if they could find something that would narrow down the search for a cause to a smaller area. They did, it was in the part of the test where they listen to the muscles. His muscles make a very very abnormal sound all the time. And it was such a weird noise, that it narrowed down the cause to a handful of things. And that was when we felt like we could make the decision to do the muscle biopsy. There was a something that we would see if we looked at the muscle, that's what this test told us.

Linden was not quite a year old as far as I remember when we did it. Where we had it done does not sedate for it. So I held him in my lap tightly and tried my best to talk him through it. And I was surprised at how well he did. Yes it was traumatic, but not nearly as much as it could have been. But that potential is there. And even though he did fine with it then without sedation, what I have learned from experience with difficult procedures is that sometimes it is worth sedating to keep the child from having to suffer mentally through traumatic testing. It doesn't matter that they can do without, they shouldn't have to, they're children. There is no reason not to in most cases, and I say that as a mother who's son is at very high anesthesia risk. But sedation is not necessarily anesthesia. They are different. For me, the risk of sedation is so much smaller than the risk of full blown anesthesia that it's okay to do as needed whereas if we had to put him under general every time a minor procedure was done, I would be a lot more apprehensive. I take it very seriously and I understand the risks involved and I would still take those risks to spare him any more mental pain than he has to have. It's mercy.

And you know, you never know if she's going to be one of those kids that is just super tough and grits her teeth and stays strong through it. She very well may be. But if you think that she would be very traumatized by it, please do consider sedation. My son can take a lot more medically and be ok with it than my daughter can, so I would tend to opt for sedation more often for her because it seems to affect her more.

[sbgrace]

I've done them but our geneticist doesn't typically on children--Andrew hasn't had it. I would think sedation would make this a doable test for her and it seems like it is very necessary. I'm saying some prayers right now that it is, indeed, a pinched nerve.

[NiteNicole]

Thanks so much for the info. I have no desire to put her through anything unnecessarily traumatic. She's so stressed out from the bloodwork she's had over the past few months, she talks about it all the time and gets panicky when it comes up. She checks with us ever day to see if it's a blood work day.

A friend just suggested I see a chiropractor. Others have suggested it in the past but when we got the tentative diagnosis for some kind of dystonia and did some research, some sources said it could make things worse (turns out that was for the muscle spasms, which she does not have anyway). I have a chiro I trust so in addition to bringing this up with her neuro, I am going to call for an appt with my chiro ASAP.

[sbgrace]

For Andrew we tend to play out his medical experiences and I think it helps him process. Sort of play therapy. We got a doctor kit and he "doctors" me or a stuffed animal. I would see a lot of playing out the lack of control and fear feelings he had surrounding things like blood draws. I do think it helped.