"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Friday, January 20, 2012

Depakote Levels Still High... Iron Also

Luella had more labs drawn on Tuesday. The depakote didn't go down too much, it's still at 167. We dropped her morning dose down to one capsule now. We'll see how she does the next week. Jim had also asked that we have Luella's ferritin (iron) levels checked. Luella's iron was lower during the summer and our Mayo doctor advised us to start Luella on an Iron supplement. Her levels increased some on the supplement but were pretty steady. On Tuesday her ferritin was at 287, normal is 5-204!! So... Miss Luella is throwing us some curve balls! Not sure why that would increase so much either. We stopped her supplement for now. I did some googling... too much iron can cause fatigue, among other things, but that might also be playing into all of this!

On the plus side Luella has had a couple nights of better sleep. We got the weighted blanket this week. I don't think that is directly related but it might be helping some. The blanket is nice. I told Jim I wanted one. It weighs five pounds. It is quilted and has little pellets sewn into the squares. When I washed it I took it out of the dryer and covered up on the couch - VERY cozy! Luella's naps have also shortened some. When she is awake she doesn't ask to go to sleep as much either.

Eating is still a battle. She does have some days that she will eat something - but it's usually something weird. At a couple meals this week she would only eat butter - Smart Balance Light, actually, but gobs of it!! So gross to watch but she needs calories and fat somehow! Today all she ate was pretzels from Chex Mix at lunch. When she does eat it's usually once during the day. I can offer her the same thing she ate earlier and she won't touch it then! She's lost a pound so far. We are just trying to not drop any more!

I think her balance has gotten a little better. It's hard to say for sure when I see her every day. But thinking back to two weeks ago and her not even able to stand still to play at her kitchen, she has improved quite a bit. Still stumbling some when she walks though.

We have much to be thankful for! All the prayers are greatly appreciated!!

video 
A video of Luella eating butter!

Friday, January 13, 2012

Lab Results

After reviewing and thinking about Luella's strange symptoms, Jim thought it would be a good idea to have Luella's liver functions tested to see if there were some liver issues giving us these problems. Jim sent an email to our doctor to ask for the liver labs and also to get Luella's depakote levels tested. We haven't had a depakote level done since September. There really wasn't a need to have the levels tested since then because we haven't changed her depakote dose since then. Our doctor agreed to do the labs and called the orders in on Wednesday. I took Luella in Thursday morning to have blood drawn. Unfortunately our little beauty has awful veins so it took about three attempts before they were successful. :( On the plus side, the final poke didn't make Luella cry at all. She was actually laughing at the guy drawing her blood because he asked her if the kitty she was holding said "woof, woof"!!

So by yesterday afternoon we had the lab results. Luella's liver functions were good, the depakote levels were not. In September her level was around 101, ideal is 100, so that was about perfect and we didn't change her dose. Yesterday her level was 182!! Almost double of what it should be. There really is no explanation of why it would be so high. It baffled our doctor too. Depakote is not dosed based on weight, everyone metabolizes the drug differently, that's why you check levels and once you find a dose that gives you the right level, you're good. We started by dropping Luella's night time dose last night and we'll go back in Tuesday morning to have her level tested again. We'll probably need to reduce the dose even more but we'll see what we find out on Tuesday.

So in the meantime, we are actually going to stay on the clobazam since it's likely it was the depakote causing Luella's side effects. Since my last post we haven't seen much improvement with the sleep issues or her appetite. Yesterday and today were both liquid diets again. Her balance has gotten slightly better. The most improvement has been in her demeanor - she was so happy and playful all day today. Talking up a storm and smiling!! That was so great to see! It was so sad to see her just wanting to be held and not even wanting to play last week.

Tomorrow (Saturday) is 10 weeks seizure free - that was our last record - pray that we can keep on cruising!!

We feel our prayers were answered in getting us to the lab results we needed to see. Hopefully by making these other changes we will continue to see improvements. Thank you for everything! All the hugs, notes, emails... they mean so much, and especially the prayers! Our God is an awesome God and we know he listens.

Monday, January 9, 2012

Good News, Bad News

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!!