Luke is at a 3.75:1 ratio now.
About 3 weeks ago, we noticed he was consistently have his clusters (grouping of seizures that come in waves of anywhere from 20-80 seizures in a row....each seizure only last for 2 seconds) in the early morning hours. Seizure free all day, plagued by seizures at night.
Soooo.....the plan was to start getting him up at 2am and giving 2 ounces of heavy whipping cream, in an attempt to get him through the night without seizures. We were successful. Good News: Luke went 10 days straight without any seizures (at least that we could tell).
All was well, except that Luke was increasingly drowsy during the day. Getting up for 2 ounces was turning into an hour and half affair, and it just seemed he was really missing his long 11 hour nights that he used to enjoy. Therapy sessions weren't going well because of how tired he was.
I had heard from other Keto parents that they had been successful at increasing fat intake at dinner time and also giving a high fat bedtime snack. "Perfect", I thought. Luke gets the extra boost AND gets to sleep all night. I just made this change two nights ago.
Bad News: Luke had a large cluster at 5:30 this morning. 80 seizures.
And, of course, I'm kicking myself for messing with what was actually working.
Obviously, we're going back now to a middle-of-the-night feeding.
Thank you for your continued prayers.
Though discouraged, I have to remind myself how much better off we are now. When Luke was diagnosed with Infantile Spasms (exactly 4 months ago tomorrow), he was having thousands of seizures......and we never had a break. The plagued us every. single. day.
We don't deal with that reality anymore.
Luke is slowly making progress....though it's s-l-o-w....it's progess. And that's enough to keep our hope alive.
praying. wow, didn't realize that there were 80...that really was a huge cluster. still believing for miracle
ReplyDeleteSo glad to hear things are going well for you. So sorry for your small setback...however, so glad you know where to turn next! Your mommy instincts and God have taken you the right direction!
ReplyDeleteIS is a marathon, not a sprint. You're doing good, Luke is doing good. You'll get there!
ReplyDeleteWow, we just read up to here. Our Alison had epilepsy from 4 years old until now. Doctors are slowly taking away meds. She has been seizure free for 8 years. We understand the painful process you are going through. God does wonderful things through it all as we bathe Luke in prayer. Just one example of God working through Alison in our lives is that our oldest daughter Kelly will be studying neuropsychology, she has a passion to help people. N&C- friends of Terry
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