We talked to neurology on Monday morning to find out Mira's lab results from last week and we were essentially stopped in our tracks with the diet. Mira's cholesterol was way above normal, clocking in at 249. The range for normal/acceptable cholesterol is 45-182. Her LDL level (low density lipids aka the "bad" cholesterol) was 166. The range for LDL is 65-120. Her alkaline phosphatase level(s), which are an indication of liver function came in at a whopping 1148. The range for this is 110-320. This could be attributed to a growth spurt.
Irony Factor No. 1: her beta-hydroxybutyrate (BHB) level, which basically is a measurement of her level of ketosis (which is what the Ketogenic Diet and/or Modified Atkins Diet is supposed to induce) was high, but still within normal range. This means that she really wasn't even in ketosis and thus benefiting from the 'true diet' during all of this. Diet wise we have been slowly moving toward the diet (cutting out most of her carb/sugar intake) over the past few weeks, but not quite fully into it.
Irony Factor No. 2: Mira had about a dozen seizures last Friday, then a half-dozen on Saturday, then 2 on Sunday, then 1 on Monday, then 2 on Tuesday, and NONE today! She has had her usual jerks and twitches, but no full-fledged seizures.
So, where are we now with all of this? We are putting her back on her normal routine and regular foods (carbohydrates, here we come!) and we will be putting her back on the Coromega 3 Fatty Acid Supplements (yummy fish oil - good for the heart, brain, and of course, cholesterol levels) for a month and have her levels and labs redone at that time. Mira will remain at her current theraputic Lamictal and Zonegran levels as well. Neurology, her dietitian, Sarah nor I feel comfortable at this point putting her on any kind of high fat (etc) diet until Mira's cholesterol and other levels are down within a reasonable range. Meanwhile we'll be looking into possibly chatting with the Metabolic Geneticist at CMH and/or a Pediatric Endocrinologist. Maybe a fresh set of eyes will help us understand Mira's strange lab results more fully.