Update after seeing Dr Wilfong- on my phone so sorry for spelling or grammar mistakes.
Her seizures have changed to grand mal seizures which are much more common and much easier to treat. Before she was having "clusters."
He think it's very unlikely that she was having drop seizures as he would have seen activity on her EEG that was a couple of days ago.
Her EEG showed MAJOR IMPROVEMENT!! He said they are looking at the activity happening between seizures and Claire's was nearly gone!! Aaaannnndddddd before she was having activity all over the brain, now it was only in front right love of brain. Which is awesome news. Also because it's in one part of her brain- if something happens and she starts having seizures that we can't control w medicine then she could be a candidate for surgery. Before that would never have been an option since she has activity all over the brain.
Our next step, is if she continues to do well, having not many seizures, then in a month we will start to play with her meds. BC she is on three meds. So the last one we added was onfi. So there are two possibilities- 1, that the onfi has made her seizures stop by itself, OR 2, it's the combo of all three that is working. So we will decrease zonegran and go from there....
And her development is great and she is talking and doing awesome!
Praise GOD!!!
Friday, January 17, 2014
Jan 17, 2014
We go to see Dr. Wilfong today. . . .
Also Claire has been seizure free since Jan 4th! (that is IF she was not having drop seizures and was just being clumsy) She had the drop seizures on the 6th and 7th of Jan.
The Whole Exome Sequencing Genetic testing is supposedly FINALLY STARTED! We had our blood drawn in June I think of 2013. . . So it has taken this long for everyone to get there SH!T together and communicate. I have spent hours and hours and days on the phone with different people and for it finally be over is such a relief. Hallelujah!!! Minimum - it could take 3 months to get results. . . but it could also take up to a year . . . .
Also Claire has been seizure free since Jan 4th! (that is IF she was not having drop seizures and was just being clumsy) She had the drop seizures on the 6th and 7th of Jan.
The Whole Exome Sequencing Genetic testing is supposedly FINALLY STARTED! We had our blood drawn in June I think of 2013. . . So it has taken this long for everyone to get there SH!T together and communicate. I have spent hours and hours and days on the phone with different people and for it finally be over is such a relief. Hallelujah!!! Minimum - it could take 3 months to get results. . . but it could also take up to a year . . . .
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