Avleigh's Journey

The first year of Avleigh seeing a neurologist they would always ask about seizures. Our answers were always “no, she doesn’t have them”. Without seeing the signs of the common types of seizures we were certain that she didn’t experience that. Throughout her second year we became more educated on the types of seizures and how to identify them. We started having suspects of absent seizures but we couldn’t prove it. They were happening so infrequently that they definitely didn’t show up on an EEG. 

Just a few months ago we uploaded a video of Avleigh doing her famous laugh that we all enjoy listening to so much. Her laughs often begin by something stimulating her. Sometimes they are completely inappropriate. We used to think that she was seeing angels and that’s what was making her so happy. That video is when it was brought to our attention that her uncontrollable laughing spells could very well be gelastic seizures. We’ve videoed her doing it over and over. Showing how it starts off mild then we can see a little fear come to her face as the laughter gets so strong that she can no longer breathe. 

We continued on paying attention to each time she would stare and loose interest to try to identify if it was just day dreaming or absent seizures. At first there wasn’t anything alarming when she would “space out”. In the last few months her staring has become more obvious and has changed in a way that she looses all expressions in her face. We are now certain that she is having these absent seizures on a regular, possibly daily, basis. 

She had her very first convulsive seizure in June. This was the worse experience we had with seizures. It was triggered by a temp of only 99.2 caused by a common cold. Her little body was shaking, eyes rolled back and her body went stiff. This lasted close to 2 minutes, left her lethargic for 8 hours and then was followed by vomiting and discomfort. 

Just a week ago, she experienced another type of seizure called an atonic seizure. This one was very short but had no known trigger. It caused her eyes to roll back just before she became unconscious for close to a minute. Still breathing, but it was as if she went from awake and alert to sleeping in the snap of a finger. 

We’re not sure if this activity is from progression of her disorder or if we are just better educated on what to expect. We will be giving another attempt to catch some of this activity on an EEG. We will continuing monitoring her closely to make sure we are aware of when the activity takes place. All to try to put pieces together to identify what triggers it to get better control. In the meantime, we have her rescue meds with her at all times just in case.