Grace is improving

I can't believe another month has passed us by. We have been able to do a lot of family things and Grace is definitely stable.

When we visited the Dr.'s office at the end of June, the PA increased her dose again because she was still seizing. She now takes 450 mg twice a day of Trileptal. This is considered a high dose and if it needs to be increased again, she will have to have lab work to make sure everything looks okay.

This new dose seems to be working. We have had a few scary episodes, but for the most part she is stable. We went to Lake Powell July 9-12 where we camped and boated, so Grace didn't get as much rest as usual. She had some early morning seizures, but appeared to be doing well.

However, 2 days after the trip (July 14) she started having frequent seizures during her nap. An hour after her nap, she collapsed in the bathroom at the local pool with a seizure. I hadn't walked through the door yet and luckily Tommy came and got me. She faired well considering the floor was concrete and ended up with an abrasion/ "goose egg" above her left eye. She said she didn't have an "aura". I thought maybe she was so excited to swim that she ignored the dizziness.

Later that evening however, she fell again. This time it was in the kitchen on the wood floor right when I was about to give her medicine. There was no warning and she falls flat as a pancake in the blink of an eye. She didn't get hurt this time. When I called the on-call doctor, he suggested that she was probably dehydrated from being at the lake and swimming so much. So I "pushed fluids" all night with lots of watermelon and chocolate milk, and she didn't have anymore seizures.

The following Monday, July 17th, she started having them again in the morning. She had one when she was asleep at 6AM that was longer than usual. At 6:30 she was sitting at the computer playing games and just fell out of the chair. Then, a little bit later, she fell into my arms while I was combing her hair.

So I have come to this conclusion. The dose she is on is okay, but when she is sleep deprived, has a low blood sugar, is dehydrated, or a combination of the three, she starts having seizures. And that's where we're at right now.

Aside from the neuro, we have an appt with the geneticist August 23. We also have an appt with the new psychologist Sept 21 & 22 for more testing. No one is at the school, so we haven't started the special ed planning yet. School starts August 24.

On a positive note, Grace's behavior is improving in several areas. When Caroline is not home and Grace is the oldest, she has been more helpful and takes on more responsibility. It is really nice. She has been really trying. This week she watered the trees for her sister because Caroline was sewing at her grandma's house. I have been really trying to praise her lots and lots. Of course, there are still meltdowns but this other is good.