"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, November 4, 2011

Another Seizure

Luella had another seizure this afternoon (Friday). I was getting supper ready and Luella had just walked into the playroom. I was just about to go peek at her to see what she was doing and she let out a loud scream and was crying hysterically. I ran to her and she was just sitting there crying so hard. I've NEVER heard her cry like that! I was so scared, I didn't know what happened to her. I thought she was hurt. I picked her up and then it was apparent that she was seizing. I laid her down then grabbed the phone to call Jim and got her meds. I gave her the Midazolam immediately. It didn't appear to be working quickly and she was turning blue - not breathing well at all. I quickly grabbed my coat and hers and the diaper bag and headed to the van.  As I was throwing the bags in the van Luella let out a sigh and then coughed a couple times. I looked at her and she was just closing her eyes. Jim pulled in the garage then and we took Luella inside.

Her seizure did stop after 6 - 8 minutes. It's hard to know if the Midazolam is stopping these seizures or if the Stiripentol is making them that short. We were able to talk to the doctor today and we decided to add Clobazam to Luella's drug list. Clobazam, thankfully just got FDA approval within the last few weeks. It won't be available in the US until after January so we will have to import it for 2 - 3 months. Clobazam, Depakote and Stiripentol are three drugs that are most often given to Dravet kids and they are supposed to work well together.

Luella has been teething as I mentioned before, but also has a cold - runny nose and just yesterday started coughing now too. Being sick is not a good thing when you have Dravet! We are hoping this new combination of drugs will help get us back in the running to beat our record of 10 weeks without a seizure!!

What a pose! Luella is ready for candy!

Luella was our little Lady "Love" Bug for Halloween. Her baby doll even dressed to match!

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