Monday, July 23, 2007

Continuing the (further) Modified Atkins Diet

After some discussion about what to do next, Sarah and I spoke again with neurology and decided to continue the Modified Atkins Diet, while seriously cutting back on Mira's egg, cream, and butter (high fat/cholesterol) intake. We area going to try to get her calories from other foods, so she can try and maintain some sort of ketosis and get the calories that she needs too.

We decided that waiting another month and putting her back on her regular foods (very carb heavy) is just a waste of time. We would rather not continue down the path of ineffective medications for yet another month or more, while waiting for her cholesterol levels to (ideally) come down. We feel that we can hopefully counteract some of the levels with the Omega 3, while also drastically cutting back on her daily cholesterol intake.

We have a standing appointment with Mira's pediatrician in a couple weeks and with neurology at the end of August. We are also trying to get into seeing a metabolic geneticist and the endocrinologist, which might take a month or so.

Friday, July 20, 2007

Sleep Issues Again

After having two great days in a row (no seizures and in a great mood Wednesday and Thursday) Mira had two seizures this afternoon. She has been getting up again at night too, usually starting about 9:00pm until midnight, about once every hour, and usually screaming for no reason. Over the past few months, her sleeping has been fantastic and I am nervous that the streak will be disrupted! Does the box fan have a 'super-speed' level?!

Wednesday, July 18, 2007

Lab Results

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.

Wednesday, July 11, 2007

On the Road to (Modified) Atkins

Sarah and I met with a dietitian (and Mira's former neuro's nurse) through the neurology clinic at Children's Mercy to initiate a modified Atkins Diet with Mira. We have been discussing the Ketogenic Diet for quite some time, but have been very reluctant to start her on it, for a host of reasons. What we have discovered, through some research, is that Johns Hopkins has been performing some trial studies with a 'modified' Atkins diet, citing similar results to the classic Ketogenic Diet, without the fasting/hospitalization requirement (see this link for more details). Recently other hospitals, including Children's Mercy, have been adopting the modified Atkins as a treatment for epilepsy.

The process of starting her on the diet is fairly easy, unlike the Ketogenic Diet. Again, there is no hospitalization, no fasting period, and no fluid intake (or calorie) restriction, unlike the Ketogenic. She will have to be monitored twice daily with a glucometer one that will also measure her ketones, to ensure that she is in ketosis. She also had to have multiple labs (done this morning at CMH) to get baselines, including an EKG. We will be really watching her weight as well.

The 'typical' Atkins allowance for daily carbohydrate intake is 20 grams. Mira will be at 10 grams or less. We have been slowly weaning her off of carbohydrates over the past few weeks, yet she isn't quite down near the 10 gram limit yet. Unlike the traditional Atkins Diet, the goal is to NOT lose weight, but rather to keep her in ketosis. Therefore, she will be eating foods that are high in fat and calories, including cream, butter, eggs, and getting lots of protein from meat, fish, chicken, etc. to keep her calorie intake up.

The plan is to try the diet for at least three or four months. If it is successful, we can hopefully start reducing her medications. The ultimate goal on the diet is to of course get her seizures under control (or least reduce them) and in an ideal world, we could eliminate (or reduce) her medications soon thereafter. We are supposed to get her labs back toward the end of the week, to make sure there aren't any potential complications in starting the diet.

So far, everything is looking good.

Thursday, July 5, 2007

Party and Holiday

The rain held off for Mira's party on Sunday and all went well. The circus tent was THE place to be for anyone and everyone (adults included!). Most of the kids were quite content hanging out in the tent, coming inside only for some rejuvenating pink lemonade or for a sugar boost so they could keep on jumping. Miss Mira received some wonderful gifts (thanks to everyone!!!) and seemed to be having a pretty good time.

Yesterday, we all made the trek (dare I call it a 'trek' when it is seven blocks from our house) to Villagefest - Prairie Village's 4th of July celebration. The only way to summarize the day - very, very humid. We all had a great time, despite the heat and were able to enjoy the pancake breakfast, see the Chinook helicopter land, and see the Marching Cobras! The Cobras rock! Sluggerrrr was able to meet up with Eli for a rematch after their duel at Kaufman a few weeks ago. This round went to Sluggerrr (see pic below).

Thanks to all for making Mira's birthday such a success - especially to Sarah for being the perfect organizer, hostess, and of course, Mommy.