Monday, July 27, 2009

doctors, doctors, and more doctors

I went to the neurologist today to talk about the whole pressure behind my eye/blurry vision thing that may or may not be occular migraines. Anyway, he suggested having an MRI done as soon as possible and an EEG is scheduled for next Friday. If those both come out fine, then I am a lucky girl who has migraines without any pain! I will probably still consult my eye doctor again, but I'm not sure if my insurance will allow me to see him before October/November. It may classify as a medical need and therefore my regular insurance would cover it before then. Gotta check on that, but I will wait until these other tests are done.

The doctor was super nice, though, and he was excited to meet his very first patient with Fragile X. He knew about FXTAS and seemed to have a basic understanding of things. He's quite the drive from my place, but I liked everyone there enough to put up with it.

Speaking of tests, I found out last week that Punkin needs to have an IQ test done again in order to stay on the Waiver program. The thing is, no IQ test will ever be able to show his true capabilities. For example, if I asked him to count right now, he would say "One, two, four, seven" or on a good day, "One, two, three, four, six, seven, eight, ten." But on Thursday when he was in the giant body-sock-type swing at occupational therapy, he counted to twenty as she bounced him up and down. He only forgot five and eleven.

What I'm saying is that we are both going to have to suffer through IQ testing that isn't accurate and is, in my opinion, completely unecessary. My goal was to only have him evaluated for his IQ or autism by someone who is extremely familiar with Fragile X; guess that's not happening! I just don't get it. His DNA isn't changing -- why would his IQ?

I understand why they need to do this, I just don't like it. And that's that.

5 comments:

Sarah said...

I'm so with you. We are just sick of evaluations. And you've been dealing with them for a couple of years more than we have.

Kristiem10 said...

I understand. Believe me. One good thing is that if his IQ needs to be low enough to qualify, his poor testing may actually help him do that. It makes for an ugly number, though. I always have to remind myself that my kids are way more functional than the number they get on an IQ test.

Jen said...

It does stink, but, it's only a number...

Holly's Mom said...

I'm with kristie, I kinda like when the reports make Holly sound much more developmentally behind then my heart feels that she is, because for now they are only peices of paper that give me services I want. if the report was written more optomistically, and perhaps made her sound slightly better then she is.. like how she might be with tons of prompting on a good day, I might get denied services. Anyways.. good luck with YOUR tests.

Anonymous said...

Awesome new picture!
LK