SUMMER FAMILY FUN

Saturday, January 15, 2011

Adventures in {MRI} and {EEG}

About a month ago The Boy was diagnosed with Childhood Absence Epilepsy.
For about the past year he did this funny thing where he zones out, nods his head slightly,
and his eyes stare blankly.
I didn't think it was anything.
The only time I noticed it was when he was getting in trouble
or I was asking him to do something.
I thought he was just tuning me out.
I said, "Hey, don't do 'crazy eyes'," we'd laugh and we'd go on.
Then it seemed to be happening a little more often and Will started to get concerned.
Then, he did it while he was telling Aunt H a story.
He was in the middle of telling her something, stopped, did "crazy eyes",
and then kind of floated back into the conversation.
It was at that point we started to get worried.

Of course,
being the internet addict fiend that I am,
I hopped on and started Googling the signs and symptoms.
We started at turrets and ended up at epilepsy.
And by the time I called the pediatrician the next morning,
I was pretty sure he was experiencing absence seizures.
I left a message with the nurse for the pediatrician.
She called back in about 20 minutes and said
she believed he was having seizures and she was referring directly to the neurologist.

When I met with the neurologist he said,
"So, what do you think it is?"
I said, "Childhood absence epilepsy."
He said, "You would be right."

He referred us for an EEG to confirm and a MRI to rule out anything else.
So, on December 30th my brave little guy had both of his tests done.
They wanted to do the MRI with sedation.
I expressed my concerns about sedating him, but agreed it might be best.
However, when I called the night before to check it,
the receptionist said that the MRI had been ordered with sedation,
but that it wasn't being done at my request.
I got nervous that we would show up and they'd still want to do it with sedation,
so I wouldn't let him eat 6 hours before the tests.
Well, that doesn't make for a very happy 5 year old :)

He got impatient for the EEG to start, but the nurses put on a cartoon
and another little boy was waiting, so that distracted him.
Please don't tell me to show up a half hour earlier than the actual test.
Because then I come a 1/2 an hour earlier than that, and it makes for a LONG wait.
The EEG was cake and he performed beautifully!
I wish I would have taken a picture of him with all the stuff on,
but I was so nervous!
This is what he looked liked, but with a big gauze stocking wrapped around
his entire head.
He had a clinical seizure during EEG and that is exactly what we were hoping for.

After the EEG one of the medical staff escorted us through
the secret tunnels over to the MRI/Imaging Center.
It was cool.
Our EEG tech was awesome and made sure the escort knew
we were patients of the clinic's director.
Then, we played the waiting game again.
This time Will kept him entertained with a walk outside.
We were kicking ourselves for not bringing his Leapster!

The MRI is pretty intimidating and that's when it's NOT on.
The tech said, "It's gonna get loud in here - like drums. You might want these."
and he handed us some earplugs - the same ones he'd already put in The Boy's ears.
They put his earplugs in and then cinched his head between
two things in either side to help him hold still.
Then a little mirrored was positioned above him,
so if he looked up he could see us sitting across the room.
Then they started the thing and I was sure he was going to
come shooting out of it.
No joke!
It was loud and scary.
I can't imagine being 5 years old and going through that.
He was so brave and strong.
It was only 30 minutes long, but it seemed to go on FOR-EVER!
At about the 20 minute mark - when the noise got really crazy -
he started to cry.
But he still laid there and endured.
There was only one time when the tech had to ask him to stay still.

We got the results this week,
and it was just as we expected.
The MRI was totally normal {phew!}
and his EEG showed his absence seizures.
So he now takes ethosuxsimide twice a day to control the seizures.
And hopefully in two years we'll wean him off and he'll have outgrown them.
His neurologist said that if you're going to have anything,
this is the one to have.

9 comments:

Cory said...

what a brave guy. MRI's a re not fun!
mychancetowin at gmail dot com

Jaime said...

Well I'm so glad he got the good kind! LOL And I'm so glad the scary tests are over!!

Mandy said...

Your poor sweet boy! I'm glad that it's under control now, and that the scariness is over.

T-Fam said...

hooray! tell the boy that baby L is proud of him. We are glad things worked out the way the did for you!

Cherish said...

Yay for medication and modern technology! I'm amazed he did so well. I've had a brain MRI and it was really creepy - I thought it would never end.

Ali said...

Wow Kyla, what a trip. I'm so glad it's controllable and that he will outgrow it! Brave little guy-

Kikal said...

What a trooper! (Both of you :)

Tyler said...

Poor guy! Having just had an EEG and plenty of MRIs I feel his pain! Glad he'll eventually get of the meds.

{april kennedy} said...

Well from one special mommy to another...good job!

Hey just wanted you to know that Regional Services cover epilepsy as one of their accepted diagnosis in CA. You might be able to qualify for some help through them with any expenses. I'm not one to seek after that kind of stuff usually, but it is there for the taking, and being that Spina Bifida, what our little guy has, is not covered and is so frustrating, I thought you might like to know epilepsy is.

We've been buying diapers for 8 years and some meds and cathing supplies for 7. keeping fingers crossed for you that two years does it!! sounds like good news from the doctors.

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