When a Fever Hits
Last Saturday, Maddie woke up with a runny nose. It was so noticeable we had to cut our errands short to get our little one back home. This brings a couple of worries. The least of our worries is me, I’m sure to get sick. The biggest worry of ours is a fever.
The only thing that we currently know brings on Maddie’s seizures, is a fever. Her only set of seizures occurred last November. They were classified as febrile seizures at the emergency room. The duration, intensity, and frequency of the seizures made the emergency room doctors rethink this. Maddie was transported to the nearest children’s hospital by ambulance.
Maddie ended up having another seizure that night in her sleep. The EEG picked it up. They were able to diagnose Maddie with focal seizures. They start on the left side of her brain. Thankfully that seizure while she was sleeping was the last known seizure that Maddie has had.
Nicole took Maddie to a neurology appointment this week, and her neurologist is going to have us do a repeat 24-hour EEG. Maddie’s seizures are seemingly under control, but we might not be picking up on her seizure behavior either. There are all different types of seizures.
I had no idea there were so many types of seizures. Individuals with Angelman Syndrome can experience quite a wide variety. There are Atonic Seizures, better known as drop seizures. These seizures cause an individual to lose muscle control and they drop to the ground. There are Absence Seizures, which cause an individual to stare off. There are the Tonic-Colonic Seizures which involve the whole body. There’s a few more different types but these three seem to be the most common in individuals with AS.
Maddie is entering the danger zone in her seizure activity. Typically children with Angelman Syndrome experience a heightened period of seizure activity between the age of two and a half until puberty. This isn’t to say they won’t experience seizures before two and a half, or after puberty, it’s just that this is the hot zone with children with Angleman.
Seizures are my biggest worry. I had never seen a seizure until Maddie had her first one on my lap. To this day my heart sinks when I see movement that looks like she might be having one. Everywhere we go, we have an emergency medication for seizures that last longer than five minutes. Thankfully we haven’t had to use it yet. Seizures will more than likely be a part of Maddie’s journey. I just hope we’ll be able to identify any seizures and adjust her medication accordingly.
-Written by Adam Birchmeier
