Sunday, January 30, 2011

New Neuro Doc - TSC Update

You heard it here....we have a new Neurologist!
Woot! Woot!

In October our Dr. Neuro...who was with us since day 1 of this seizure world...moved out of province. Of all the nerve! We're set up again though with a kind Dr. Neuro. Even better than I had imagined. Which isn't hard...because I tend to imagine all sorts of difficult scenarios when on our way to Dr's appts. That's just my way. Imagine the worst and be pleasantly surprised when it doesn't happen. Kinda like customer service, under promise and over deliver!

The new Doc Neuro was open to my concerns and questions. He asked what I wanted from him! I didn't have to push for anything as he listened and heard my concerns. Can you hear the angels singing? I could almost see them hovering!

Bup is less than enthused with Drs touching him...even speaking to him, yet R was friendly to Doc Neuro. Maybe it was the kind bedside manner. Just regular kid stuff that pediatric specialists should always follow...letting R use his stethoscope and such. There was not one tear shed by R throughout the whole appointment. That is a miracle!

So, what's the scoop?

Farewell Keppra! We HATE Keppra. It changes behavior and personality. No more intense, inconsolable tantrums. Gone will be struggling to get R to take the bitter, bitter pills.

Small increase in Trileptal. He's now at the top of the scale.

Hopefully these med changes will control the seizures because if they don't....well...the Doc is not encouraging that other meds will work. %10 chance.

Seizures...we are seeing seizure activity on a fairly regular basis. Quiet seizures. Brief seizures. Hurtful seizures. The wiggly hand still appears.

However, there is a new seizure. Which I don't like to think about because it's possibly stemming from a different area of the brain. Temporal Lobe.
(image borrowed from one of my fav blogging friends)
Possibly. We won't know for sure until an EEG and MRI are done. So, we wait...wait for dates for the MRI and Long Stay Video EEG.

This new seizure is brief as well and if you don't know R, it would probably be missed. He stops and looks at me with this look of confusion. I ask if he's okay and he quietly says, "I am fine."
"Do you feel funny?"
"Yes. In here. In my heart." and R pats his chest.
I hold him for a few moments until he lifts his head and says, "I'm fine. I'm fine." Then off he goes.
Not R's typical complex partial or myoclonic and atonic seizures. Something new. Something no one wants to see or have R to experience.

So we wait and celebrate... NO KEPPRA!

1 comment:

  1. Hurray for helpful doctors and getting rid of yucky medicine!!
    Oh I hope the 'new seizures' are not a bigger problem. R is such a brave boy. Brave heart.

    In the meantime enjoy the little victories - No more keppra!