I just finished updating our personal "seizure report" on Zane. It is just our record of how many seizures he's had, what kind and how long. It is now 5 pages long. Today was possibly his worst so far. I'm guessing he had as many as 50 all day long. We stopped counting there were so many and early this morning they were occurring too frequently to keep track. Oddly enough though, he didn't have any from about 3:30 to 7pm. We saw absence, myoclonics and a few drop seizures. But sometimes he could stand through a seizure without falling. Lots of weirdness. Not sure why such a rotten day after only having 4 yesterday. I have a few theories but I will keep them to myself until we hear back from the Dietitian. In the meantime we are going to try to fine-tune the diet on our own to see if we can make a difference.
On the bright side, Zane didn't have any vomiting today. So since Thursday morning he has only vomited once and it was only his snack on Friday. He has kept everything else down. I think we found his favorite meal so far, tonight at dinner. He had dark chicken meat (skinless) and strawberries and we turned his cream and oil mixture into ice cream. Until now he has had cream (to drink) and butter (straight and plain) with every meal. By using the oil he didn't have to eat any butter. And we could hide the oil easily in the ice cream. We are very much so still playing around with our options as far as meals go. I hope to find some more "favorites" so that it isn't so rough on him. I'm also still trying to figure out the best options for lunches to be sent with him at school.
Well I'm sure I could write more but I must move on to other things. I do want to mention that he lost 2+ pounds at the hospital. And that is with an empty stomach for the first weigh in and a full stomach for the last. I am mentioning it now because although I bought a composition book to serve as our diary of the diet, I have yet to write in it. There just isn't enough time in the day. For the time being this and the aforementioned seizure report are serving as our diary. Oh, and I'm also keeping track of his meals on my calendar.
Hope you all are having a good weekend.
5 comments:
It's a good thing you are so organized. Squeeze Spiderman for us. And squeeze yourselves too.
I'm sorry you guys had such a bad day yesterday, I hope today is better.
And if you need a distraction, I have a backyard that needs to be mowed. Just kidding, hang in there girl your doing awesomely!
50 in one day. sounds very scary to me.. Im so glad you have Nathan's mom as a new friend. Dont forget we are all here holding your hands! Figuratively and litterally, if you just call. Hugs too.
Medical issues going on in our family, but I am home tonight for a short spell. I just believe in my heart this diet is the solution to Zane's seizures. Keep up your notes and find those meals that are the most pleasing for him. I will keep praying for all of you that better days are fast approaching. mb from tc
Tommorrow's a New day. We are praying hard for you guys!
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