This is not our first step….perhaps our 20th but I still do not see the entire staircase. In fact, just when I think I can see the staircase, it becomes like those in the Harry Potter books…the staircase is always changing…keeping us on our toes.
Samantha went in for a follow up blood test today only to reveal that her metabolic levels are higher than last week. They went down when she was fasting but went right back up once we started back on formula. Her digestive system is struggling, her pancreas is working too hard.
The culprit? The ketogenic diet. This is a tough one for me. The ketogenic diet controls or helps 60% of kiddos with seizures. Those 60% either become completely seizure free or, in Samantha’s case, have good seizure control with diet and reduced meds. But the diet is hard….hard to manage and even harder on Lil’ Miss’s stomach. For two and a half years, her meals have consistented of olive oil, hard boiled eggs and the tinest bit of carbs where we can squeeze it in.
It’s hard on the liver, kidneys and pancreas.
BUT it controls seizures. Hard choice to make, eh?
I have said “hard’ seven times in this post……
Tomorrow we go back in for further testing. Tests will confirm one of two things:
1. Everything is fine. Her pancreas is plugging along. No changes.
2. We need to stop the diet. It is a strain on her organs. If we do stop, Samantha will be admitted tomorrow evening. She will be put on I.V meds, placed on an EEG and weaned off the diet.
We will watch to see if she seizes or perhaps(?) does not seize. We will also watch to make sure metabolic levels normalize.
What do I want? Ha! As I take this next step…unsure of what lies beyond, I only, truly want Samantha to be healthy……my list of healthy wants include seizure free, healthy blood levels, and a little girl who is not dopey due to too many seizure meds.
Tall order? We’ll see….I’m just taking the step.