Jan 17 2014 after DR

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!!!

Updated Pictures of Claire

Claire getting her EEG 1/15/14

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 . . . .

Jan. 2014

Claire is now on 4.5 ml Keppra, 50 mg zonegran and 2ml onfi (each twice a day)
 She's having a seizure every three days or once a week.
She is now also having big seizures a long w her tic like ones. She has had 4 big ones so far. All last under 5 min.  These big seizures- she shakes, sometimes seems to not breathe, lips turn a tint of blue and she passes out sleeping right after.

Also, Waiting to hear back from dr Wilfong but the nurse said what I was describing (I thought it was maybe a side effect of meds? Or she was just clumsy) was what some patients have, called drop seizures. *sigh* Claire literally is walking in a straight line, super slow (no reason she should fall) and then just falls flat on stomach and face. Busting her nose. It's bizarre which is why I mentioned it but never thought it could be a type of seizure. 

We see him again January 27

Meds seem to be helping.

Claire has been on Zonegran and Keppra. . . and SO FAR. . . about 2 -3 weeks. . . she is having maybe 2 seizures a day. and they consist of 1or 2 head nods each. which is a MAJOR improvement. Today we increase dosage of Zonegram to 50 mg twice a day- Instead of 25 mg twice a day.
She had an EEG today- they said it showed nothing different than the previous ones that were done. . .

I know the medicine is working because she has started to say words and imitate words I say. . . She acts like she is understanding more of what we say and trying to communicate herself. Which is what she should have been doing a few months ago. . . It is very encouraging!!!!

We see Dr. Wilfong September 14, so that will be nice to finally talk to him again - instead of through a nurse.

Also found out, she is allergic to something she is eating- which is causes her to have huge, inflamed hives on the skin that the #2 touches. . . and im talking the second it touches her skin she is mad and itching. along with that, her inner thighs are covered in eczema. .which the doctor said is from the allergic reaction?? does not make total sense to me . . . I have to put a steroid cream on the area twice a day for a week. They also took blood to see if it would show what she is allergic to.

keppra and zonegran together.

now on zonegran and keppra- (generic of both) 3.5 ml of keppra twice a day and 25 mg a zonegran once a day. today we start zonegran TWICE a day. Her seizures are smaller (just a head nod) but she is having them happen every hour. So im hoping with the zonegran twice a day we will start to see more changes. . . good changes. She is also saying new words and seems to be able to learn a little easier. . .

2 Corinthians 12:9-10

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.