Skip to main content

Doctor Daze

Today was our follow-up with Dr. Neuro. Somehow afterwards I always feel like I got hit by a bus! Honestly...they should incorporate spa therapy into neuro follow-ups. Where the doctor goes over all the yucky stuff while we're getting Swedish kneaded on a bed of warm pebbles. Or pedi & mani"ed to perfection...french tips please! Heck...I'd even settle for a nice neck massage! I think that would be a much easier way to handle...

topics such as...
"Trevor's EEG really didn't clean up the way we had hoped...it's quite concerning"
...and...
"He's certainly delayed a few months developmentally but Im sure it's nothing to worry about"
...or...
"We usually use such-n-such...hmmmm...I'm not sure why we didn't"...

And so went our very un-retreat-from-reality-like meeting with your Girlfriend (aka Dr. Neuro) today. She was referencing vitamin B-6...which some studies have shown linked to improved EEGs. And since your's is still quite icky...bring on the B-6! We're gonna give it a go for a month...do a follow-up EEG...and if there's no improvement she'd like us to move forward with Folic Acid supplements. Another month of finger crossing...followed by another EEG... And the circle goes round again....

And then we're off to Boston sometime in the next coupla months for a B.E.A.M test. It's a much more intensive EEG. Flashing lights...clicking noises...awake time...sleepy time...comparison scales...all kinds of nifty stuff. We're hoping they blend it all up and give us some of the answers we've been seeking. Perhaps even the exacts of where the foci are in that little brain!

And even though our little visit was informative...and we feel like we have a sense of direction...somehow I'm still left feeling dazed!

But it's nothing a nice Princess Package couldn't fix...

Labels

Labels:

Comments

Shanna Grimes said…
Ugh, don't you hate appointments like that?

I have felt that way with a lot of Ethan's appointments. Kay's are usually pretty good. Our doc is such a sweetie with a super warm and caring disposition. He is always super optimistic, even when the news is if'y, he's honest, but always optimistic.

Ethan's diagnosis appointment was not so nice. After the evaluators tell you, he doesn't do this, or this or this and he functions at a 24-28 month old, but he's three and blah blah, wa wah, wa wah. They start to sound like Charlie Brown's teacher in Peanuts.

I will check out the beam website tomorrow. Gotta rest. I am going to fall asleep at my desk. I'll wake up at 3AM with the keyboard stuck to my face.

-Shanna
March 6, 2008 at 10:35 PM
Danielle said…
LOL...I'm sure you look cute with keyboard indented cheeks!

Even tho we love Trev's neuro she's really great & adores our little man...news like that still is hard to take in, ya know. And it brings on the attack of the "what if's" again! I've been doing SO good not thinking about what if Trevor doesn't...isn't...never...Grrrrrr!

Anyway...it helps that we have a "plan". Who knows maybe Trev'll be that 1:10000000000000000 kid that B-6 works for? :O)

And I'm thrilled about the BEAM study...it's really brain mapping...and can help us detect where his foci are. And as morbid as that is & sounds...I have this NEED to know!

...danielle
March 7, 2008 at 4:43 AM
JSmith5780 said…
MANY kids on the group have neuros who will inject B6 DURING an EEG. The improvement should be immediately noticeable. We have never had this done though. It was never even given as an option. No point wasting a month if a 5 minute EEG will suffice!
March 7, 2008 at 7:57 AM
Danielle said…
Hmmm...I've heard rumblings of B-6 around but thought it seemed pretty inconclusive. But when Dr. H suggested we try I thought "why not". Altho had no idea the effects could be seen right away! Not sure that she knows that herself!
But I agree with you...why waste a month. Altho I think she's going to use our BEAM test as the follow up EEG?

...danielle
March 7, 2008 at 4:29 PM
blondie said…
Glad to hear you are getting some answers.....even though they weren't exactly what everybody wanted to hear. I suppose it is better than not knowing. Is B-6 given by injection? The poor little guys has been poked and prodded so much! Why do they say he is behind a few months developmentally? What is he not doing that he should be doing?
Love you Danielle!
March 8, 2008 at 6:25 PM
Post a Comment

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

I was talking about you today

That's right. You. Sitting there glued. To the computer screen. Getting your Trevy fix. You who hasn't been able to tear your eyes away. The one who checks back here gobs of times a day. Hanging on every post. Especially the dripping with drama or funny posts. Because you need to either laugh or cry alternately. Just like me. And somewhere...sometime...somehow...over the course of these past couple years... ...you found yourself here. Reading about me. About my family. About my Trevy. And slowly you were drawn in. Until you couldn't help yourself. You were head over heels. Unashamedly addicted. Maybe we connected in a support forum. Perhaps we're old college friends. I know we have family following. Hi guys! Some teachers and therapists. Maybe even a medical professional or two. Perhaps our kids play ball together. We might be FaceBook friends. Or you could be a friend of a friend. Even a complete stranger. But to us... you each have a very special pla...
16 comments
Read more

runaway

I tend to be a live out loud kinda girl. But sometimes... well...sometimes life is just so heavy. So intense. So overwhemling. That it brings out the recluse in me. Like lately. The thing is...I know it'll pass. It always does. And I'll learn something. Grow. Hopefully. Survive. Certainly. Because I have to. It's just right now. In this particular heavy moment. I would much rather run away to some tropical paradise and sip martinis until Jonathan calls to tell me Trevy's back at home. Happy. And seizure free. With a new head of curls covering the scar and bouncing around the house. I am a coward after all. I've never denied that. And I really don't want to live through this next month. Which is probably why my posts will be random. At best.
15 comments
Read more