The Seizure

Any day that Maddie is seizure free, is a good day. At least that’s what I used to say. I must admit I got a little complacent when it came to being on seizure watch. This doesn’t mean that I didn’t give Maddie her medication. It’s just that being concerned with seizures wasn’t at the forefront of my mind anymore.

The onset of Maddie’s seizures came when she was 17 months old. One day while fighting a fever, she had seven violent seizures within a two hour period. We were still searching for answers at this point. Maddie’s genetic testing hadn’t come back yet. She met all of the classic signs and symptoms of Angelman Syndrome except for having seizures. That November day was a prelude to her diagnosis.

Thankfully Maddie had been seizure free until last week. I say thankfully because there are some individuals with Angelman Syndrome that have daily seizures. I must admit I was caught a little unprepared for Maddie’s seizure.

The day started like any other typical day. Maddie went to daycare and I went to work. Nicole and I were getting notifications from daycare like any other day. Then things took a turn during the afternoon. We started to get reports that Maddie was a little fussier than normal. Our daycare sent us a message that Maddie was acting a little strange.

Since it was a Friday afternoon and I had wrapped up my work, I decided to pick Maddie up a few minutes early. Maddie seemingly was happy to see me, and I didn’t really notice anything different. When I brought Maddie home, we played in her play room. I got up to turn on the sprinkler in the front yard. When I came back a minute later, Maddie was on her knees with a blank stare.

I could tell right away, that my daughter wasn’t there anymore. In a little bit of a panic, I tried to get Maddie to at least look at me. Her blue eyes had gone dark. She wouldn’t respond even though her eyes were open. I immediately looked at my phone to look at the time.

We have a rectal medication for seizures that last more than five minutes. This is an emergency medication. There is always a dose in Maddie’s diaper bag, as well as a dose in her bedroom. This medication travels with us wherever we go.

I picked Maddie up and brought her into the living room. She was unresponsive. I checked my phone, a minute had gone by. I decided to call Nicole at work. Nicole told me that she was packing up, and she would be on her way home. I checked my phone again, two minutes had gone by.

Since seizures can be so complex, recording a seizure taking place can be beneficial to a neurologist. Simply recognizing what a seizure is and what a seizure isn’t, is half the battle. I had the presence of mind to start recording Maddie in the middle of her seizure. I took a 30 second video and then I started to see my little girl coming back to me. I looked at the time once more, the seizure had lasted three minutes.

After I knew Maddie was okay, I immediately called her neurologist’s office. I then sent in the video to her neurologist. Thankfully Dr Cook’s office is fantastic and even though it was a Friday at 4:30, we got a response back. We upped Maddie’s medication and we used another rescue medication, Klonnopin.

A seizure is one thing, but Maddie’s behaviors after a seizure are another aspect that we have to watch. At times an individual can lose skills and/or muscle control after having a seizure. Sometimes neuro pathways can become damaged during a seizure. Also medications can cause some side effects as well.

In Maddie’s case, her sleep was thrown off. She was pretty sleepy in the first two days after her seizure which is expected. The rest of this week has been pretty hard though. No matter what medication we gave Maddie, she just would not sleep. She would stay awake for most of the night, and then take long naps during the day. It seemed as if her circadian rhythm was affected.

A surprising change of events is that Maddie has become more vocal. After her seizure, Maddie has started to babble more often. She has been having full on “conversations” and is even doing some call and response. This could all just be coincidence or this could be directly attributed to her seizure.

I don’t think I’ll ever take for granted a seizure free day again. This past week has been a wake up call. I think most of us Angelman parents have learned that once you think everything is going great, a surprise will always pop up. For today, Maddie had another seizure free day. To me, that means it was a great day.

- Written by Adam Birchmeier