"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

Saturday, February 4, 2012

Seizure at the Pool Tonight

Well, we were one day shy of hitting 13 weeks without a seizure... We took all the kids swimming tonight and Luella was SO excited to be in the water! She is like a fish in the bathtub so I knew she would enjoy the pool. She just giggled and smiled from ear to ear! She loved it! Then 15 minutes later she had a seizure. :( I gave her midazolam (her seizure rescue med) and it worked more quickly than we've seen it work in the past. The seizure stopped and she slept for about 30 minutes while I held her and watched Jim and the kids swim a little longer. When Luella woke up she was groggy but still wanted to get back in the water. I was a little nervous about putting her back in the water and it was about time to leave anyway so we just decided to go. Once we got everyone home again Luella was basically back to her normal self.

We aren't sure what triggered this seizure. The past several months she has only had a seizure when she was sick (UTI, Strep, etc..). Luella actually did have a UTI last week. We found out on Wed (Jan 25th). A couple days before that we noticed she wasn't having many wet diapers so I talked with our Dr here and we got a urine sample and yes, UTI! She didn't have any fever or anything and didn't have a seizure. She just finished up the antibiotic this week and now this seizure. Many kids with Dravet have seizures because of being over-stimulated, bright lights, noise, etc... There were a lot of those potential triggers at the pool. It's just something we will have to keep our eye on. Hopefully Luella will not have any of those triggers. It can be so hard on families when you have to avoid certain triggers!

I was actually going to write a post this morning about how great Luella is doing. We really feel like we have our old Luella back again (mostly). She is just SO happy and bubbly. She actually squeals with excitement again, something we haven't heard in awhile. Her sleep has improved and the last 4 nights she has basically slept through the night and not needed to take a morning nap most days either! (Why she decided to wait and do this AFTER Jim returned from his business trip? I don't know! I averaged about 4 hours of sleep a night during the 5 nights Jim was gone!) It is SO nice to hear her happy and playing and not asking to take a nap! Her eating has improved a little but it's not close to being "fixed" yet. She has days when she will eat - sometimes even without being bribed with a pretzel, and other days when she's back on a liquid Carnation Breakfast diet. We have a medication that will increase appetite but we haven't started it yet. We wanted to wait until we were done adjusting her other meds first.

We did get another depakote level done last Friday and it has come down a little more. We also completely dropped the clobazam. I think we'll just wait and see how things go for a little bit. If she ends up having another seizure soon we will have to decide if we want to adjust her meds again. We appreciate your prayers SO much!! We are praying to beat this last seizure-free record next time - 12 weeks, 6 days!

Hope you enjoy this video of Little Luella laughing and having a great time swimming!!

Video of Luella swimming.

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