Celebrating (what we didn’t see) Feb. 2

Feb. 7, 2010

I realize I’m late jumping on the bandwagon with all the Bill Murray/Andie MacDowel references, but I know for sure if I had to relive Feb. 2, 2009 more than once, I just don’t think I could handle it.

Last year late January Nathan started having a problem with seizures (very common with PMG. In fact, for most kids, it’s the seizures that give cause for EEG and MRIs which is how many are diagnosed as PMG kids.) The beginning of 2009 we started on a seizure med, because he had one seizure the week between Christmas and New Years, and another a week later. We were upping the dosage, but not seeing results.

Feb. 2, 2009 Nathan went to school just like normal. He made it through all of the activities and lessons and when it came time for snack (30 minutes before dismissal,) he had a seizure. Of course, I raced to school and found the teacher holding and rocking him in the corner, just trying to comfort him. He seemed sad, and disappointed as somehow he had done something wrong or it was his fault it happened. We got him packed up in the car, and I suspected he would fall asleep in the car the way he typically would have on the way to the sitter.

About 5 minutes into the trip home another seizure struck. It’s just him and me in the car, travelling down the freeway at-uh 65 MPH, when while falling sleep, his arms rose and once they got to eye level the convulsing began. It lasted around 20-25 seconds, and again he just cried, not knowing what happened, why it happened or how he had lost control of his body. We made it the other 15 minutes home, and I looked after him. He slept on the floor next to me and I laid there not being able to do anything but watch and pray.

Then Feb. 3 hit. Again, he had a seizure at school, but this time I was already there, watching from the other room. Again, he just wanted to be comforted, and we finished the last bit of the school day together. We got strapped into the car seat and headed home. On the same stretch of road, again the I-70 seizure struck. The only difference was once we got home, this time the seizures kept going. He had hit 6 seizures by 6:30 and we headed to Children’s ER, where he had another 2 in the waiting room before getting a bed and 7 before the day was over. We stayed in the hospital for two days, upped the medicine even more (we started at 1 mL twice daily, and ended at 5 mL twice daily. It took almost 10 minutes to get him to take a full dose.)

Two weeks later, basically the same thing happened. Seven seizures during the day (basically anytime he started to fall asleep, he would start seizing), another trip to the ER (where they recognized him and got him right in this time) and he still had another 8 before being able to sleep through the night. We had found that the medicine was causing more problems than it was helping. Having to ween off the first medicine to start the new one, we were in the hospital for another two days. We tried a new medicine and thus far, it’s worked as well as we could hope.

We’ve officially past groundhog’s day 2010 and if we can make it to next Wednesday (2/17) we’ll officially hit the one year, seizure-free mark. I don’t want to jinx anything, but regardless, we’re very thankful to have gone this far and living in one aspect closer to normal as other kids.

Every second seems like an eternity during the seizure, and that’s speaking from the observing role, not the victim. When he wasn't seizing, the only place Nathan found any comfort was being held on my shoulder. I will never forget the helpless feeling I had episode-after-episode, watching and feeling my child quake in my arms, not being able to help in any way other than not letting him hurt himself.

Our hearts, thoughts and prayers go out to all the other kids who haven’t been as lucky to have found the combination to keep them as stable as Nathan currently seems. All I know is if there’s one day that could never have to relive again, it’s not to hard to pick which one it would be.

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