Friday, February 19, 2010

Where to start...

This new, rigid schedule has me spinning...

We still see some improvement, although some days are better than others. I'm back to my ridiculous counting habits trying to spot trends in improvement and decline. Nothing to bank on yet...I see great hours that leave me excited and filled with optimism, only to see the tally marks fill the page the next hour.

Still, even with these horrific hours, the grand total for the day consistently stays under 150 (worst day so far 149 -the day he was extremely acidodic...the best 61). On average he will have around 80-90. Not great. But better.

There are questions regarding, well, just about everything. From the food ingredients to his lotion. What is keto-friendly what is not? I had no idea that something as simple as chapstick or toothpaste could throw him out of ketosis or cause increased seizure activity.

So because of this, every issue seems to be his irregularity (fun times). Even more so when no one seems to be available to answer these questions for me. Who would have thought that upon getting released from the hospital (before a holiday weekend nonetheless), that his epi would be going on vacation or that the doctor over the diet would be out sick for an entire week! Of course, the dietician can only tell me what's safe for the diet -not what to give him or how much.

I'm pretty much bound to the house (and practically the kitchen) at least until this lifestyle becomes a bit more familiar. There are ALWAYS dishes in the sink since every meal requires nearly a cabinet full of cups and bowls for measuring, cooking, serving, etc. But, all of this I will gladly do as long as it seems to be helping. Seizure freedom is the goal...but even relief is welcomed right now.

It's exhausting. But, not nearly as exhausting as seeing forceful drops and falls every 10 minutes -which is where we were. He was clustering or dropping literally every time I turned around. That was much more stressful than checking for ketones, weighing food, cooking, and adding up fluids.

Even though my having to keep such a watchful eye for seizures and all the new added responsibilities seems to be more than I can handle at times (if you only knew the state of my laundry pile up!), seeing him go two hours without a seizure is more than worth it.

Tuesday, February 16, 2010


...something that seems to be at least helping the seizures.

They are still very much here, and very much a part of everyday...but they are better.

There was some improvement before we even left the hospital (I didn't want to get ahead of myself and post it though), and at least 50% or more reduction until Sunday. Sunday and Monday were a bit higher, but today is much better. I've only seen 34 so far (before the diet, he'd already had over a hundred by this time).

It's still way too early to make any assumptions about how well it's going to work for Austin, but it's looking very promising at least right now. I've never seen such consistent results from any treatment since he began having seizures almost two years ago. Even though he's been topping out between 60-100 (average) a day this past week, and this would have been extremely high for him a year ago, it's quite an improvement. They had been steadily increasing since August, and by Christmas, I would estimate he was having somewhere in the range of 200-300 a day. So, 34 at 4:30 pm is wonderful for him right now.

Like I said though...still too early to draw any conclusions...but he's doing very well right now. His energy level is still quite low, but there seems to be improvement there each day as well.

I'm just going to take this one day at a time and see what happens. Hopefully, we will continue to see more and more improvement...

Friday, February 12, 2010

keto is underway

I thought I'd let everyone know that we have initiated the ketogenic diet and arrived home from the hospital. All is well so far.

As with any hospital stay, we were stressed out of our minds. I read up on the keto diet before going, but there were still many surprising twists and turns. For one, Austin became extremely acidotic immediately. Our clinic does not require a long fasting period, but Austin was an exception since he had to fast for sedation for the MRI and LP. He started getting moderate ketones within 6 hours of starting the diet and large ketones soon after that. The next morning he (and his bedding) were covered with the previous night's dinner...yuck!

But, with meds, we've been able to keep the acidosis under control and everything else is looking good. He seems pretty disappointed with the quantity of meals (he's quite a hefty eater), and the fact that water is his main source of fluid...but other than that, he's adjusting well. A little weak and sluggish, but that was to be expected as well.

A few things I've noticed about myself and dealing with the ketogenic diet...

#1 -I MUST be organized!!! To keep this from consuming me & my entire day, I've found that the more organized, the better.

#2 -I MUST stay positive!! If this is going to be our new way of life for the next few months (or even years), I'm going to have to accept the changes and make the best of it.

#3 -Creativity is important! Some of the ingredients alone are enough to make anyone want to gag, so incorporating them in different, exciting ways is going to be the key to getting that heavy cream and canola oil down the hatch! :)

#4 -I've gotta keep the faith! Probably the most important because with it, all the others will fall into place much more easily. Austin's miracle treatment is out there, and I must treat this like this is it. Otherwise, I may not have the motivation to stay organized, or the energy to stay positive, or the patience to get creative.

I must applaud every parent who has taken on this diet and stuck with it. It's much more involved than I ever imagined...and I expected it to be difficult and tedious.

So...that's our latest.