Well, it's been a little over a month since my last post. I hope everyone had a joyous Christmas and a fabulous start to 2012!
We have good news, bad news to report regarding Luella... First off, the good news - NO SEIZURES for 9 weeks and still counting!! We were so thankful to get through Christmas, New Year's and my brother's wedding without any seizures. We hope to make it well past her last seizure-free run of 10 weeks.
Now the bad news... Luella has had several side effects that have gotten worse over the last month and really bad just in the last week. We weren't exactly sure if these were side effects of the medication or Dravet itself - we thought it would seem a little unlikely that we would be seeing things get so bad a month after we got to her target dose of clobazam. Fortunately we were able to talk to Luella's doctor on Friday. She felt it was probably due to the clobazam and that it was time to back off of it and see if that helps. The three problems we could really use prayers for now are:
1. Sleep problems - Luella is ALWAYS tired. She has recently had a few days with 14+ hours of sleep! She takes a long morning nap and a long afternoon nap and is always asking to go to sleep - sometimes within 30 minutes of waking up from a 2 hour nap! Before reducing the clobazam on Friday, even when Luella was awake she was very lethargic and really didn't want to play. Since reducing the clobazam we have seen a little improvement in her engery levels when she is awake. She seems a little more interested in playing. She does have a hard time sleeping at night. We recently read about a new study that shows kids with SCN1A gene mutations (what Luella has) have longer circadian periods - so this could be why we are seeing sleep problems now too. We started her on melatonin last week and have seen some improvement in the nighttime sleep but we aren't 100% convinced it is helping that much yet. We've also ordered a weighted blanket and are waiting to try that as well.
2. Not eating - Most of last week Luella simply would not eat. We've had appetite issues in the past but she would skip a meal here or there and usually eat one good-sized meal a day. Last week she wouldn't eat at all. Basically every morning from Wednesday to Sunday I had to give her PediSure or Carnation Breakfast with a giant medicine syringe because she wouldn't even drink it on her own. No matter what I offered her, she just wouldn't eat. Lunch and supper were also struggles. She was pretty much on a liquid diet. We've seen some improvements since reducing the clobazam - she will actually eat hot dogs now and ice cream one night. She hasn't wanted to eat anything else. I still have to make her Carnation Breakfast to drink - her "pink milk" - and she is starting to drink it some out of a cup but I usually have to finish it off with a syringe. There are medications that help increase appetite and we did get a prescription for that but we are waiting to see if things continue to improve before we start it.
3. Ataxia - basically lack of muscle control and balance. Last week Luella was having a really hard time even standing still to play at the new kitchen she got from Santa. She just wobbled all over the place. It was really bad last Friday, she could not stay in one place just to stand there and "cook" so then she just came back to me and wanted to be held. Since we reduced the clobazam, Luella's balance has improved a bit. She can now stand in one place without too much wobbling but she is still so unbalanced when she walks.
I'm thankful for Luella's seizure control but I'm so sad to see her struggling with these other problems. We are praying that once she is completely off the clobazam she will get back to normal - whatever that is! Right now she just isn't "Luella". I'm asking for your specific prayers in these areas for Luella. Thank you!!