"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, April 13, 2012

A Seizure to Start Friday the 13th

I'm really not superstitious, but having a seizure within 30 minutes of waking up on Friday the 13th kind of stinks! I didn't see the seizure start but she went down flat on her back and hit the back of her head, hard. She had a nice lump back there. It was a tonic clonic again - never fun to watch. The midazolam brought her out of it quickly but she's been slow to recover from the dopiness this time. Usually it take 30 - 60 minutes and she's pretty much back to normal, we are going on 90 minutes and she is still just lazing around. Hopefully she will bounce back to normal here soon.

An update on her depakote levels that we had tested last week... they are LOW!! Ideally we want her to be around 100, she was at 56 this time. Everyone is baffled as to why her drug levels fluctuate so much when we haven't changed her dose. This is why she's been happier, eating better and sleeping through the night lately... AND having more seizures. When her depakote levels are where they are supposed to be it messes everything else up. We would like to find a happy medium!!! We did increase her meds yesterday morning so we'll have to see what happens now.

Jim is still really pushing the Ketogenic Diet. If you are curious about that you can read more here -  http://en.wikipedia.org/wiki/Ketogenic_diet. I really want what's best for Luella but the diet is SO STRICT and would really effect how we eat as a family. Please pray that what is best for Luella would feel right to both Jim and I. We were able to up our visit to Gillette Children's to next week instead of next month so we hope to figure out some things when talking with Luella's doctor there. Thank you for all of your support and prayers!!

UPDATE-- I just wanted to clarify that the Ketogenic Diet would ONLY be for Luella. It's not a diet the rest of the family would be eating. The reason I said it would effect how we eat as a family was that I would not continue making food or eating things in front of Luella that she could not have. Eating out would be more difficult since you can't just order off a menu for Luella. The meals are calculated using specific ratios and ingredients measured with a gram scale. The meal MUST be eaten entirely - NO leftovers or the diet will not work. 

Luella recovering after her seizure

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