Saturday, September 29, 2007

This Week

Not much has really been happening over the past week. Mira is still averaging about 1-2 seizures a day, mainly when she is waking up or falling asleep, which is very common, according to her neurologist. We are still having difficulty getting her ketones up and within a 'therapeutic' range (so to speak) which could account for her seizures not being completely controlled. We are going to take her in to CMH next week to have her labs done again, just to see where she is with the diet and to see how ketotic she is. Chances are, we are going to have to supplement with Ketocal in order to boost her ketones. Overall, the diet is proving to be a success, we just need to get her into better ketosis. We are moving forward, slowly but surely.

We did get her Jenx Monkey Stander last week and she has been using it for PT at home. She broke it in the first day by throwing up on it! Probably not a good idea to get her in it right after breakfast........

Friday, September 21, 2007

Back in the Swing of Things

After some travelling last weekend and more this week for business, things are settling back down for this weekend. I was trying to come up with a witty title and all I could come up was this? Secretly I have the 1985 'hit' by A-ha stuck in my head. Yes, random, very random.

Mira has been doing well over the past week. She is still averaging about a seizure or two a day, but has really been in a good mood all week. She seems to be handling the tweaks with the diet, especially the MCT oil. We are gradually increasing her intake to get to 1 oz. daily. She has been off of the Lamictal completely for a week and we haven't noticed any negative changes yet. We will start weaning the Zonegran very soon.

We all had a great time in Saint Louis last weekend and especially at Siena's (Mira's cousin) birthday party. Thanks to Tom and Nikki for the animal farm fun!

(Pics from left to right: Eli and the tortise; Siena on a wagon ride; Sophia with the rabbits; Siena ready for some cake)

Thursday, September 13, 2007

Roller Coaster Loop

Mira is down to her last day of Lamictal tomorrow. We always get anxious when she is coming off a medication, since you never know what to expect with starting one or ending one. She has consistently been having good days over the past few weeks, only having one or two seizures, then yesterday, she threw us for a loop. She had 7 seizures, 4 or 5 of them within about 20 minutes, right after dinner. She has never had so many so close together for a long, long time.

Today, though, she had a great day and was smiling and laughing some. Eli, Mira, and I went for a walk she was staring up at the trees and was giggling some. She even decided to belt out an unprovoked belly laugh during dinner time. Didn't think my cooking was that bad...........

We are heading to Saint Louis for the weekend for Siena's (Mira's cousin) 1st birthday party - can't wait to see everyone!

Saturday, September 8, 2007

Slowly getting there.....

We are still tweaking Mira's MAD (Modified Atkins Diet) by adding, subtracting, and calculating ingredients to raise her ketones, with the help of her dietitian. Her labs came back from last week and we had mixed results.

The good news is that her cholesterol and her lipid levels came down, not to within a normal range, but they are certainly lower, which is great. Also, her alkaline phosphatase level is still normal, leading us to believe that her off-the-chart lab from early August was a fluke.

The bad news is that her beta-hydroxybutyrate level (measurement of ketosis in a sense) is still low, meaning she isn't burning enough ketones to put her into adequate ketosis. Therefore, our dietitian recommended adding a certain percentage of MCT oil to her diet. MCT can be hard on the stomach, so we will go slowly with it.

In the meantime, we started weaning Lamictal, and she should be off of it completely in about two weeks. We haven't noticed any difference yet, but it is early in the game. Five out of the last six days, she has only had one seizure per day. This is promising news so far with the diet, considering she was having 5 or 6 a day a month ago.

Monday, September 3, 2007

A Great Labor Day Weekend

The weather is giving one last Kansas sweat-fest kick before it starts nestling into fall. After a wonderful week of mild weather, we are back into the 90's with lots of humidity.

We started doing some tweaks to Mira's diet over the weekend and we think it is starting to show. First, we eliminated all of the flavored waters and Atkins shakes she has been having. We found that most of the prepackaged and store bought drinks have lots of additives in them, which can mess with her state of ketosis and make the diet less effective. Instead of the shakes, we now make our own, with Stevia (all natural no-carb sweetener) heavy cream, and all-natural flavoring through Bickford Flavorings. Sounds disgusting, but it is actually good. Sarah disagrees, calling the shakes 'bizarro-juice'. It's about as natural, carb-free, sugar-free, and simple as you can get and it will have a minimal effect on Mira's ketones.

It is extremely difficult to find flavors for drinks that don't either have alcohol, glycol, corn syrup, or some other bizarre additives I cannot pronounce. Most parents who try their kids on the Ketogenic Diet or the Modified Atkins Diet swear by the Stevia and/or Bickford add-ins for flavors and sweetening.

We also created a very strict schedule of ingredients and measurements for all of her meals and have really been calculating her carb intake. Since these tweaks over the weekend, she has been doing pretty well, only having one seizure Sunday and one today. Last night, she slept for 12 hours straight too.