Sunday, January 23, 2011

Keto Update: 4 months +

I have a calendar where we mark how many seizures has each day. And there was a definite increase in December compared to the prior months on the diet. Still, it was less than before we even started.

Now, this could have been caused by a few things. 1.) We started weaning him off one of his meds. Granted, we were taking this VERY slow (only dropping out 1 of the 6 pills he had during the day), but coming off anti-seizure meds can be rough, even if you take it slow. 2.) The diet wasn't quite tweaked as well as we wanted, which is also possible because it's new! or 3.) An unexplained crappy month of seizures.

So, before his next neurologist appointment, Soren had his massive amount of blood work done. (which no matter how well I plan, always finds a new way to be horrible)

At Soren's last neurologist/dietician appointment, we discovered that Soren was not as ketotic in December as he was in October. He definitely was in ketosis (I knew that from the urine ketostix), but the blood work is, of course, more exact and provides real numbers.

Now, less ketosis means less seizure control. So finding out the cause is REALLY important!

But WHY was he less ketotic? I was feeding him the same exact foods. And Soren doesn't go around grabbing a cookie or a handful of chips. Well, the other thing we noted that was Soren, like many people during the holidays, had put on some weight. About 3 lbs. Again, this is the opposite of how the diet is supposed to work. If anything you lose weight!

The most likely answer is calories. Soren is on 1200 calories a day. Now, personally, I've thought this was kind of high from the beginning. (Actually, he started on 1300 and we dropped it after the 1st month.)

I mean, Soren's not running around like most kids. He's just not burning calories like a typical 7 year old. Plus, in December he was out of school for a chunk of the month (and specifically when I got his blood work done). So, he was probably burning even fewer calories because getting wheeled around in his chair while Mom Christmas shops is less than aerobic.

The solution? Drop his calories another 100.

And while I wanted to continue weaning him from Depakote, we decided to pause until we could determine if this calorie drop helped decrease his seizures.

I am happy to say that it appears to be working. I haven't seen any seizures for 4 days, which is our longest stretch in a while.

So let's cross our fingers that this calorie decrease makes Soren more ketotic and he gets better seizure control!