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.

Genetic Testing. . .

10:00AM Genetic testing has been sitting for a month and not even sent to Baylor yet. Bc of lack of insurance communication... STILL trying to get it all figured out. Pray for clear answers from insurance and good communication between all parties.

I pray about this and 20 MIN LATER. . . 
The Lady from TCH called back and had it all figured out with insurance- She sent in Claire's clinicals trying to prove that she needs the genetic testing and now insurance will call her back and let her know if Claire is covered or not for the testing. . . . . PRAISE THE LORD!



Please pray that they decide to cover the whole exome genetic testing! It is expensive! 

Still on Keppra. .

So on 3ml of Keppra twice a day she is still having 3-4 clusters of seizures a day. but they are very small. waiting on call back from doctor to see if we are upping her dose or what is next. . . . .

Keppra

So . . for the past 2 weeks Claire has been taking Keppra. The first week was 1 ml, twice a day (morning and night) and the second week it was 1.5 ml twice a day. The seizures are smaller. . however 1 or 2 of them are still big (meaning her arms are included). Called the doctor and 1.5 is a very very small dose so we can keep upping the dose for awhile before we stop this medicine. So for the next week she is getting 2 ml twice a day. The side effects of this medicine is that she can be emotional. . . and I definitely see this sometimes. She gets very frustrated and mad and cry's over things that are not a big deal. .  but that could also just be a normal 1 1/2 year old thing!!! So who knows! but please pray for clarity and for God to heal my baby!

On to the next medicine....

After doubling her dose of Zonegram to 100 mg, she started having seizures that looked like they did at the very beginning. -where her arms where part of them...and she was having them more often. So today we start on Keppra. It is a suspension liquid which is going to make it SO MUCH EASIER to give her the medicine. She will take it twice a day. They said to watch for behavioral changes.. (her being overly emotional and crying a lot, or being aggressive) Grrrreeat....
 It is also possible that she will not have any side effects. Everyone PLEASE keep praying for a solution for my sweet Claire.