The longest month of the year

Jan. 30, 2011

"30 days has September, April, June and November…" we all know the rest. Basically, what it comes down to is February always has the fewest number of days. However, like any motivational speaker would say, it’s not the size that matters, it’s what you do (or what happens to you) during that time.

For the last two years, our family has dreaded the month of February. In 2009, February marked the high-point of Nathan’s seizures. He had days of 12-15 seizures, leading to two separate trips to the ER and two hospital stays of three days each. With our regular neurologist out of the country on a family medical emergency, it took several other people to stop and discover the that medicine he had been taking at the time Trilepthal was actually making things worse instead of better.

In 2010, we thought that we were on the verge of being seizure-free for a year. We had our annual appointment with our neurologist, and we were almost excited to tell him the news. We had been on Keppra since that last hospital stay and that had been working pretty well. Still the doctor thought that with Nathan growing and gaining weight we should increase the dosage respectively. Granted, at the time, it was a matter of going from 1.4 ml twice a day to 1.7. It wasn’t two days after the appointment, when they came back. This time 2-3 a day for a couple of days in a row.

For Nathan, and from what we’ve read about other PMG kids, sleeping/bedtime/waking-up are all times when they seem to be most vulnerable. Nathan seemed to catch on and he decided to come up with his own solution – never to sleep again. Of course, when people are sleep-deprived they are more susceptible to having problems, and Nathan would.

We have Diastat, which is basically liquid valium, which we can use for prolonged seizures (lasting 5 minutes or wore, which thankfully we haven’t seen) or for clusters of seizures, (which tend to be Nathan’s signature.) For Nathan, the main benefit has been when given Diastat, it put him to sleep, allowing his body and mind to somewhat reset, not letting him fight falling asleep and keeping him relaxed for several hours. We haven’t had to use any since last February, and we’re quite content to leave it locked up.

As we approach February 2011, we’re already at a disadvantage. Nathan can seem to shake a stomach bug, which has been popping back up over the last several weeks months. He’s fine for days at a time and then he goes 2-3 days when we’re lucky to keep anything (including liquids) down.

On top of that, Nathan is fighting taking his medicine (including his Keppra and Prevacid.) He'll let it either/or float around in his mouth, not swallowing, until he can trigger his gag reflex and get everything out for good. Once he does that, the esophagus becomes more irritated and less accommodating to anything we try to feed him or give him to drink. I’m fearing that what Annette and I have fought against, until truly medically necessary, may now have to be talked about…the stomach tube. I know there are many PMG kids out there with them, and there are positives, but it’s just something we don’t want to have to think about.

We’re hoping February of 2011 has better things in store for us. That Nathan can get back up on his feet (both figuratively and literally) and can continue to do all the activities he’s known an loved over the last couple of years. Our scheduled neurologist appointment this year is in March meaning we hopefully won’t have issues after the meeting this time. But until the next four weeks pass, we’ll be gearing up for more than just snow and cold weather.

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