We think things are improving…or at least going in the right direction this week. Gabriel has continued to have drop seizures which cause him to fall down but he has not had any big grand mal seizure this week.
Today he had a great day. Talked well, enjoyed a playdate, interacted and played TONS with Mommy. It is very exciting to see his personality shining through on days like this. He did have 4 small seizures tonight. Each one was a short gasp followed by a second or two of silence, then he would cry. He didn’t fall down or loose all muscle control like he has been. Then after 10 seconds or so he would be back to playing 🙂 Very encouraging.
We move up to 4:1 ratio next week. This ratio has been shown to be the sweet spot for doose kids. We are praying it is Gabriel’s Miracle in the diet. (The ketogentic diet is referred to as “The Miracle Diet” because it saves so many children.)
It is overwhelming to think where we would be without it. We have been doing keto for 6 weeks now and it is starting to feel “normal”. This process has reminded me so much of when we first became parents. We are all sleeping through the night now ( haven’t had a seizure wake up in weeks). We understand the schedule he needs and will do whatever it takes to stick to it! We leave the house with a bag filled with TONS of extra stuff just in case. This new addition of doose to our family is not one we expected but we are figuring it out.
I forgot that you didn’t have the diet set yet and were moving up in the ratio’s. I am so very thankful that the diet has been helpful for G. Just as you said, I can’t imagine what life would be like if you didn’t have this option. PRaying that the sweet spot is extra sweet for G!
Lisa Treese said:
That is a great analogy. I am so glad to hear that the routine is getting easier!