Thursday, March 02, 2006


So in case you haven't noticed, I haven't posted a lot about Ethan lately. A friend actually pointed this out. And yes, there is a reason. A very good reason, if you ask me: we've been having a strange string of good luck. And I don't want to jinx things.

The last news I posted was about Ethan's kidney ultrasound. And yes, we had a novice tech who was D-U-M dumb, but it still went well. We got the official results a week or so later, and everything was perfect.

And before that, our last major appointment was with his Boston posse. And everything there was great. They said he was healing incredibly. They even postponed his second surgery.

Since then, things have been going - don't quote me on this - pretty well.

Ethan got to his maximum dose of Lamictal about a month ago. I noticed that he seemed to be going longer and longer without having a seizure. But I couldn't be sure if he really was or if I was just imagining it. Counting them is a pain and always inaccurate since his seizures start and end very quickly. If you blink, you may miss five.

I know that the only way to measure progress (or regress) is to do a seizure chart. So one Saturday, I wrote down every seizure we saw. By the end of the day, we had only written down twelve.

TWELVE. For those of you who don't live in the LGS world, that is a big improvement. The last time we charted seizures, I wrote down at least thirty. By lunchtime. By then, I was so depressed that I just stopped writing them down. We saw another twenty or so, and estimated that he was having anywhere between 50 and 70 on a typical day. Short, but very frequent.

Now, we're sure we missed some this recent Saturday, so he's probably having 15 to 20 a day. But still. Seeing twelve in a day versus thirty in a morning? That's a big difference.

I called Dr. AJ and let him know where we stood. The nurse called back with instructions to increase a few more milligrams, to see if it would help any more. Then she said, "Oh, and the doctor said to tell you that this is great news."

Yeah. Tell me about it.

I've written before about the highs and lows you go through when dealing with LGS. We've definitely had our share of lows, but when you're on a high, the lows seem a million miles away. Other than CG's terrible-twos-tantrums, things in our house have been calm. Peaceful. We're coasting high on this wave.

It's amazing how your outlook changes. A "high" is having fifteen to twenty seizures a day? Two years ago, I would have never considered that a good thing. But I also know that, two years from now, I may be thinking fondly of the days when he had "only" 50 short seizures. LGS is known for drug resistance and worsening seizures. So I know those days are coming.

It will take a few weeks to get to the next level that Dr. AJ prescribed, but I'm pretty sure that it won't help. In fact, I'm not completely convinced that the medicine is what caused this good stretch in the first place. We've been here before. He always has fluctuating good days and bad days, even without a change in medication. But if the good days correspond with a dose increase, who am I to say it isn't the medicine?

Every day, I watch him like a hawk. I'm constantly asking Jete, "Do you think he had more seizures than usual today?" He doesn't think so, but I know he doesn't pay attention to them like I do. I see the subtle eye movements, the familiar quick twitch that tells me his brain has just skipped a beat. And I'm pretty sure I'm seeing more seizures now than I did that Saturday.

I'm not jumping to any conclusions yet. I do have one shred of hope that the medication is working. I notice that he tends to have more seizures during the weeks that you tweak the dose. Once you get to a steady dose and his body adjusts, they tend to level off.

At least, that's what I'm hoping will happen. Only time will tell.

Thanks to a snowy New England winter, our appointment with the Ketogenic diet expert got postponed for a second time, now to late April. That Saturday that I charted, I briefly thought "Maybe we won't need her at all!" But the truth is, with Ethan's situation, two months is a really long time. His situation rarely stays the same for more than a few weeks. Things will be completely different by April.

Especially now that I jinxed us.

Although, to be honest, things haven't been completely perfect lately. We did have an interesting time at the pediatrician's office a few weeks ago. The missing testicles? Yeah. Still missing. They're remaining too high in the abdomen. They'd like us to see the surgeons. Apparantly, they have "magic hands" and may be able to flush them down once and for all. If not, he'll need minor surgery. No big deal.

So there's the update. In short: everything in our house is on a high. Including Ethan's testicles.

1 comment:

Kelly said...

OK, so tell me WHY he needs to have them "in effect" anyway? Or why ANY 4-yr-old would, for that matter? I sure hope they're not suggesting a "cosmetic" surgery (like he doesn't have enough surgery to deal with?).....

I don't know, don't you think that maybe it's the meds? Even a little? Well, we take the good any way it comes, right? I could care less if it's a bowl of cereal that gives her a good day! I'll take it!

I know what you mean by jinxing it though. I've thought the same exact thing. But just think, if you get the seizures down, maybe he'll do something for the first time...look at Jenelle, she's crawling!

I think our kids made a New Year's Resolution or something...they're all doing good!