Thursday, October 9, 2008

Mostly good news, so far!

Well, since we just went up again on her Meds last nite and she had
another one of the high doses earlier today, no seizure activity. This
is good news since it seems like we may have found the magic dose if
it continues this way. We did have that happen last week, when we
increased, so I don't want to get too excited yet.

The plan for tonight is to deprive her of meds and see if we can catch
a cluster.

He did find a seizure focal in the left frontal lobe, which coincides
with her partial seizures and possibly her tendency to appear that the
spasm activity is primarily on the right. More excellent news, still
no hypsarrythmia! I asked if it was possible that it never was IS at
all and if it was possible that they were partial seizures that
clustered. He said most likely, they are still spasms. Another doc had
reviewed her last EEG as well. Because the movements, classic jack
knife IS, and the fact that for the moments she had these movements
her brain activity went flat for that split second, that it is still
IS. He said in rare occurances you can have IS without hyps. Which is
wonderful in terms of development.

He did find that her right cortex appears to be damaged, which would
be the part of the brain that can effect vision. He is not certain
what caused the damage, whether it be a tuber or a seizure. He would
really like to catch a seizure so he can get a more accurate picture
of what's happening.

We are hopeful that she will have an episode tonight, or tomorrow
morning so they won't keep us here too much longer. We are set to go
home at around 1pm.

If they do find that she is having spasms and they prove to be
uncontroled by Topamax, we will move toward the Ketogenic Diet which
will require a week stay in the hospital at a later time.

Let's hope we don't need to go down that road. We love to see Kaylee
enjoy the rich things in life, like cake and ice cream on occasion,
which would not be possible on the diet.

Thanks every one for all your warm thoughts and prayers.

Shanna Grimes
(Sent from my iPhone)


baby trevor's mommy said...

I hate saying I hope she has a cluster soon...ugh...but I know you've got to be ready to go home! At the same time...I'm really really hoping the upped dose does the trick. I know it's hard to get excited...I'm at that place. Yesterday Trevy only had about 10 seizures...but I'm not ready to celebrate because last time that happened he had over 100 the next day! I hate all the cat n' mouse! Anyway sweetie...finding a potential focus is good news! Or at least heading towards a place of more answers...



~Mama Skates~ said...

read ur post last night, but couldn't post a comment via mobile web....hope u get/got more good news today!