On Wednesday we had Isabel's 6hr EEG. For the most part, she did wonderful. Honestly...I'm not just saying that because I am her mom and I have to, I was really impressed with her. The only part that she hated was getting strapped down to put the electrodes on. She screamed like I have never heard before, sounds came out of her that I didn't think were humanly possible. But, as soon as she was taken out of the torture device and asked if she wanted a dog or a cat backpack she answered immediately with, "Meow". So she happily put on her cat backpack and into the small room we went. They had cabinets full of toys to keep her busy so we played for awhile, watched TV for a bit then had lunch. The nurse came in and asked if I could try to get her to sleep...ha! So I made a valiant effort (which the nurse saw since we were being video recorded). The nurse came in after about 10 minutes of watching me struggle to get her to lay down and told me to go take a break and that she would try. I politely laughed at her but gladly jumped at the chance to leave the room. When I came back 20 minutes later, Izzy was fast asleep. I don't know how those nurses do it! So Iz and I took a nice hour and a half nap and when she got up we only had about an hour left of the study. The nurse came in to get us and put Iz back in the torture device to remove the electrodes. Again, screaming and scary noises came from my sweet little girl. When she got up, her hair looked like a hot mess but she was still as cute as can be. The nurse sent us back to our room to gather our things and came back in with a giant green teddy bear for Izzy and a gorgeous green knit hat for her to wear home. She said she didn't want Izzy to get cold with her wet hair but I think she wanted to hide her crazy EEG hair just like I did :)
Overall it was a long day, but CHKD make the experience enjoyable for Izzy and for that we love them!!
Keppra-We have been using this since day 1. It has not caused any side effects. She is currently taking 4.0mL 2x a day.
Vitamin B6- 1 25mg tablet crushed daily
Dilantin- We tried this once to stop a cluster of seizures. It worked very well but Isabel developed hives after taking it.
Tegretol- We started this med in August of 2011. After about a week on the med we noticed bruises appearing in odd places. Her neurologist ordered some bloodwork and after the needleprick, she did not clot. So we discontinued this medicine after about 1.5 weeks.