Thursday, January 13, 2011

"Part of your son's brain is missing...."

.
Imagine my shock........ when the DR said that today at his appointment.   "According to the MRI... he is missing (some) of his Vermis" ...  

Vermis, btw ...... is Latin for "Worm"

Part of my son's WORM is missing ......

::: deep sigh :::

We have known there were issues with Nathan's Cerebellum since before he was born.  His 20 week ultrasound showed a cyst in the brain that they quickly labeled as Dandy Walker  ...  It was confirmed after birth, and everything else, and he's had a few scans over the years...

He just had an MRI done with in the last two weeks.

We haven't gotten the results yet.  We thought we had a Neurology appt but it turned out it was a Neurodevelopmental ... and we had the Autism Clinic set up for today, which was further in the process then the other one would have been ... however, I really liked the DR.

So ....... issues with the cerebellum....  that part of the brain has a hand in the following things.... motor control, balance, cognitive functions - such as attention and language, emotional functions such as regulating fear and pleasure, coordination, and the sensory systems....   The Cerebellum is the pink thing under the brain on the picture below...


So ... today, the DR says to us "He's go the Dandy Walker, right?" and I said yes.... he asks a few more questions...  and then says something about "cleft palate" and we're like, he has that.  He's like... "hummmm" ... ya know how DRs do that ....  and then he says that it's possible that Nathan may have something called Jouberts Syndrome rather then the Dandy Walker.   Apparently Dandy Walker is sometimes mistaken for what turns out to be Jouberts Syndrome ....  ('it's French - Joe-Bears) ...

We don't really know what this means for him...... but he's going to start seeing a DR who specializes in disorders of the cerebellum....

Then he tells me that (I'm not sure if he said part of, but I think he did) .... part of his Vermis is missing...

Now, I don't know if they didn't see the missing piece until this scan because he was previously to small... or if they didn't mention it...  or what.... but no matter ...  I didn't automatically go to part of my son's brain is missing cuz he has a fluid filled cyst in his head.....  years ago.......... so this - indeed - came as a HUGE shock to me today.  HUGE.

I could cry ........... huge!

What does this mean for him?  I don't know.   It's OBVIOUS his autistic symptoms stem from his medical issues, but in order to get some services he needs, he really does need the diagnosis.   Regardless of the reason why, he has autism....  and I have a broken heart....

1 comment:

Jenna said...

Definitely something you do not want to hear come out of a doctor's mouth! :(