I love a good Midwestern thunderstorm. The air so still it quiets the neighbor’s dog. Lightening flashes so bright they illuminate the entire sky. Thunder booming so loud you can feel it in your chest.

Electrical storms in the brain, I can do without.

Robert moved out of his Old Home and we have said goodbye to inattention, high staff turnover and a few unnamed folks so uncomfortable with seizures they asked him to leave (of course, the “official” line was quite different).

We have said hello to New Home with a 3:1 patient/staff ratio, familiarity with seizures as well as a promise of more age appropriate social interaction. Such high hopes!

However, New Home has brought an onslaught of seizure activity.

I first noticed a problem when Robert and I were playing cards a week after he moved in and he had two minor seizures lasting about 10 seconds each. Nothing too unusual except they were back to back. I thought the move may have caused his seizures to act up so documented the seizures and played a few more card games (he won, as usual).

A couple of days later, Robert had a seizure when I came to visit and, after greeting me with an exuberant “Hi, Trish!,” he fell backwards smack into his dresser, ripping his shirt and gouging his back in the process. (Yes, I tend to have that affect on people). 

The same night, he had back to back seizures while showering (thankfully, he uses a shower chair now) and started yelling during the second episode. Well, that’s new. Maybe it’s the stress of the move but more likely, his medications are messed up. Robert is on several medications and I keep a detailed list of correct dosages as well as the times he is supposed to have them. Before leaving Old Home I confirmed the medication information but the aide at New Home told me he was taking medications at odd times during the day. From her description, it was not consistent with the schedule that he was on at Old Home.

The next morning, I called the director of New Home and discussed his increase in seizures, the change in the presentation of the seizures and asked about his medication schedule. I had the neurologist fax over the medication list in case the problem was a mis-communication between Old Home and New Home (a highly likely scenario). She assured me his medications were the same dosages but said the times were adjusted to fit with their other medication dispersement times. I went through the daily schedule with her and told her what the times should be. She said a few changes would be made. All sounded good.

Two days later, Robert was visiting at my house and had back-to-back seizures lasting at least six minutes each. He tried standing and tried changing his clothes. He grunted, moaned, twitched and shook for close to 15 minutes. When he could talk, he told me he wanted to put his pajamas on, clearly not realizing he was at my house. I was about to call 911 when he stopped seizing and was coherent again.

Obviously, there’s still a problem.

I compared the medication schedule from the Old Home with the New Home medication schedule and found a difference in one of the meds. They were still giving one med a couple of hours later than normal. What are these people doing?

When I returned Robert to his New Home that evening, I talked with the Aide who put me in touch with the Nurse. I explained that because his medication schedule is not consistent with what he was used to it is affecting his seizure activity and it needs to be changed back immediately. She explained they were trying to avoid Robert having to take medication when he is away at a Day Program. Really? Well, either the Day Program deals with medication or they deal with seizures. I vote for medication. I asked her to change the dosage times back to what they were before he moved in and to not make any other changes unless directed by his neurologist. She agreed and I confirmed today that the change back to his usual medication schedule was made. Hopefully, that’s the end of this problem but I will continue to closely monitor it.

As Robert’s advocate, I realize that I sometimes have to create a few storms of my own in order to get him the care that he needs. And, believe me, I can give a good Midwestern thunderstorm a run for its money.