Worst month ever

Oct. 4, 2009

As much as I try to keep this site upbeat and positive, I do feel the duty to report about the truth about PMG. I can type this posting now, as it’s been over six months since the events unfolded. Gratefully we came out on top.

We knew early on that PMG brings with it the likelihood of seizures. It’s suspected that 80% of those with PMG will have seizures. One danger of seizures is there always the potential of regression of skills/abilities, that we’ve worked so hard to build. There are many different seizure medicines out there, but none are a guarantee and there’s no true way to know if a medicine is working…until it isn’t.

It’s almost ironic that February 2009 (a 28-day month) was the longest month I hope I’ll ever have. Nathan had his first non-febrile seizure right before the end of 2008. He had a second a week later. We talked with our neurologist and decided it was time to start medication to try to minimize the issue. We started off at 1mL twice a day. It’s natural lime-mint taste didn’t go down very smoothly with our son, but we knew we had to get it in him.

As I said before, you never know if a seizure medicine works until it doesn’t, and this one didn’t in a big way. As February 2 hit, so did one of the worst days in Nathan’s life. We counted 14 seizures that day. Once he hit number 4, we decided we were heading to the ER at Children’s. He had another 2 before we got there, and another 8 before he could get a dose of Dilantin. And what a dose it was. Submitted via an IV, it was 50mL given over a 45-minute period. Once that was fully in him, it seemed to have things under control. We were admitted to the hospital and he was under observation for another 2 days. Our neurologist was called away for over a week due to a family emergency. The docs in the hospital decided to increase the medicine we had been taking to 2mL, twice a day. They also sent us home with another medicine that could be injected similar to how asthma patients have emergency inhalers (although this med goes in the other end.)

About a week later, (once the Dilantin had finally worn off of him) another seizure came, and then another. We decided that four was the magic number for the emergency medicine. That seemed to do the trick. Talking with the neurologist’s office they upped the med again to 4mL, twice a day. Did I mention how much Nathan didn’t like to take this medicine? It was beginning to take over 15 minutes just to get this one med down.

Another day, another seizure, and the dose went up to 5mL twice a day. The next day, only two weeks after the trip to the ER, we’d need a second. Another four seizures by 2 p.m. and I gave him the second of the two shots we had of the emergency med. This time it didn’t seem to help. The bizarre thing was we saw the pattern. They would hit as soon as he would try to fall asleep.

Of course, while all this was occuring, Annette was on-call and having to work late, so she couldn’t really see what was going on, only getting calls from me every time another seizure occurred. My parents and I went to the ER again with him, and Annette met us there. The admissions workers recognized him and send him back to a room within minutes (the first time a room wouldn’t open up for a little over an hour.) In the room, I held him and Nathan decided he would never sleep again. As midnight approached, he just couldn’t fight it off any longer. He would start to doze off and within 2 minutes, another seizure would hit. There’s no more helpless feeling for a father than watching your child shake within your arms. You can stop it, you don’t want to squeeze too tight, but there’s no way you’re going to let go.

This time, they took him in for an EEG to see if they could detect anything else that was going on or see why it got so bad, so fast. We are very thankful for this doc and her discovery that it was actually the medicine that was making things worse. Since we kept upping and upping the dosage it was only natural the problem would get worse. The med we had was for a partial brain seizure, and his were effecting the whole brain. The key was trying a different medicine, and getting him off the old, stat! Of course with any medicine like that, you can’t just stop, (as that may cause more seizures itself.)

It would take two days to wean off the old and pump-in the new. By the grace of God, this medication seems to help. At least it hasn’t shown any seizures since then, even multiple months later. Another good point, we’re still at the lowest (initial) dosage 1.3mL twice a day. Nathan still doesn’t like to take it, but he fights this one less.

We know there is no guarantee that problems won’t arise later on, and hopefully Nathan will never reject (or grow a tolerance for) this medicine. It just means our prayers never stop, and we thank everyone who keeps us in their prayers as well. It’s another part of the lifelong battle, but one we’re trying to win one day at a time.

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