"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

Sunday, October 28, 2012

Weekly Seizure, More Decisions

One week, almost to the exact hour and another seizure tonight. These after supper weekly seizures are getting to be so common! Pretty much a "normal" seizure tonight. One dose of midazolam and it stopped in about 5 minutes. One out of the ordinary thing though, Luella seemed so restless after her seizure before she really fell asleep. She kept grabbing at things and not laying still. Ashlyn was cozying up to Luella to comfort her and Luella got a hold of Ashlyn's finger and pulled it up to her mouth. She chomped down on her finger and wouldn't let go! I had to pry her mouth open! Ashlyn was in tears. Any harder and Luella would have broken the skin. Those teeth dents stayed in Ashlyn's finger for quite awhile. Once Ashlyn felt better and Luella had settled down, Ashlyn was right there next to her again!

Ashlyn comforting Luella after her seizure.

Luella had fun earlier in the afternoon. After her nap we carved pumpkins. Luella's pumpkin was Elmo! She got quite messy cleaning the pumpkin "guts" but it was lots of fun. We waited to light them up right before bed when it got dark. Luella woke up enough after her seizure to see her Elmo pumpkin all lit up before we got ready for bed.

Now on to the decisions I hinted at in the title... I've read about some kids actually having more seizures while taking a carnitine supplement. Luella takes carnitine to help protect her liver since so many of the drugs she takes are routed through the liver. When she started the carnitine it didn't seem to cause more seizures but we are going to try to take her off of it for awhile and see what happens.

Luella is still doing the LGIT diet. Unfortunately we've seen no reduction in the number of seizures. We will still continue the diet for the 2 months but I'm quickly coming to the conclusion that this isn't the one for her. With that, we spoke to another Dravet family last week and are seriously considering another type of diet. It's called GAPS and let me just say this would not be an easy diet!! This family has seen great things happen for their daughter - things we'd like to see happen for Luella!! I have a lot of learning to do before we would be ready to jump into this diet!!! I waiver quite a bit on this one - one day I'm all eager to learn more about it and the next day I'm in tears thinking about how crazy it is! Basically the diet is wheat and sugar free and NO PROCESSED foods, none! The Introduction part of the diet is the craziest. If you are interested you can read more here -http://www.gapsdiet.com/INTRODUCTION_DIET.html.

Please pray about this and that we would make the right decision for Luella!!

Luella's Elmo Pumpkin!

1 comment:

  1. First off I must say that that is quite the impressive Elmo pumpkin! Ben would love that!
    I will be interested to know if you find any benefit from removing the carnitine and we wish you the best with the diet decision. We didn't see any benefit for Ben with the Keto diet until about 5 weeks into it. I was eager to finish out our two months and move on but then we saw quite a change in his myos so we have stuck with it for now. The GAPS diet doesn't sound fun :(...but if it helps it sure would be worth it wouldn't it?