Then the Monday after Easter - when she was on Spring Break from school - the seizure activity resumed. She had 7-10 clusters of seizures that day in probably a 20-minute period. These were brief, but just kept coming one right after the other. I gave her the dose of valium as instructed, hoping this would calm her down so she could get some much needed rest. The valium stopped the seizures from happening, but besides walking a little clumbsy, did not make her tired at all. She didn't nap all day, and I couldn't get her to sleep that night until close to midnight. Good times.
She had a seizure the next morning when she woke up, but besides that, was happy and playful - until Thursday night. She went to sleep at her usual time but woke up at 10pm and wouldn't go back to sleep. A little after midnight, she had another seizure and then finally went back to sleep, although she was very restless. She had two more seizures the next day, so I put a call in to her neurologist.
Dr. Mower obviously didn't like hearing all of this and said that because she is at her maximum doseage of Keppra, it was time to start weaning her off of that and on to Lamictal. This is the medication I was hesitant to start previously because of the side effects of skin rashes (one can be very serious).
We are in week one of the weaning process, which will take a total of 6 weeks. The good thing about the Lamactil is that it is a tiny, chewable pill, so it's super easy to give to her. I can even put it in food if needed. I'm so tired of having to force the liquid meds in her. The bad news is that after taking the Lamictil for only 2 days - with a very low dose - she has developed a rash on one of her hands as well as a small area on her chest. Nothing is ever simple, is it? So, again, I call her neurologist.
Dr. Mower says that typically with a Lamactil rash, it doesn't get better over the course of a couple days - it gets worse. And today, it looks much better than it did over the weekend. What he would like me to do at this point is not increase the dose just yet, to monitor the situation over the next week and go from there. He said that if the rash gets worse, give her Benadryl and see if that clears it up. If it doesn't, then I'll need to bring her in so he can take a look at it. If it turns out that she is having a reaction to it, then we'll have to try another medication. It's pretty much trial and error at this point.
As far as school goes, she's been doing great! Last week they had a "teddy bear picnic", which was adorable. It was Raquel's first boy/girl party. :-)
Here are some pictures:
Raquel sitting contently for circle time before we went outside to play. I need to get one of these chairs - they are very sturdy and don't tip backwards like most do.
Sitting with Dad, having some juice & cookies, while listening to Miss Sara read their teddy bear story book. She like the parachute so much...
... she needed to lay on top of it!
And here are a couple Mike and Gabby took on Saturday that I felt deserve posting:
Posing with Dad in her new wagon. And, of course, big sister Gabby was there to enjoy the fun!
Modeling Dad's hat in the tennis courts.
How 'bout that hair? It's absolutely gorgeous!
My happy girl...
Her smile just melts my heart.
Taking things day-by-day, often minute-by-minute, but I'm not complaining. I was reminded by a dear friend on Mother's Day that since I was on this Earth first, my kids chose me to be their Mom because they knew I would give them what they need to learn and accomplish things in life, and to just keep doing my best and let God do the rest. She said I should feel especially honored by that. Thank you, Jodi. xoxo
No comments:
Post a Comment