Building infantile spasms awareness with
Evan's help.....
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It is important to share a few things that could help raise awareness with other parents and their families and friends about Evan's seizures. I am not a medical professional, nor have I been trained as an expert. I am just a dad who spent much of a year observing and comforting Evan as he struggled with epilepsy and the thousands of seizures I witnessed him have.

Evan primarily experienced what is known as infantile spasms; although he has had others, just not as often. Infantile spasms was Evan's primary diagnosis and the main focus of his medical treatment up until his surgery. This seizure type comes in the form of clusters. A cluster is measured by how many spasms occur during a period of time. For example, Evan could have five clusters a day that could each last a range of five minutes to fifteen minutes. Each cluster could bring anywhere from twenty spasms to over one hundred. Infantile spasms for Evan usually happen when he first wakes up from a deep sleep, or prolonged nap. However, it would not be uncommon for them to come when he is being stimulated, such as when taking a bath or eating. Although less common, they have also came in his sleep.

There are three main parts from observing Evan's seizures that are of importance to be able to recognize them: body movement, noises and eyes.

1.) Body Movement: Evan's spasms have a repetitive motion to them that stays consistent. It is almost as if he is trying to do a situp, or lunge forward towards his feet. His legs kick up and his arms raise straight up as well. I have also heard them being described as a "jack-knife" or "hiccup," as this is common terminology used. Many times this movement is more subtle than others. This is why it is important to pay close attention to him when he first wakes up.

2.) Noises: Although Evan, just like every other infant, makes random noises that can mean different things or nothing at all, there are definitive sounds I hear coming from him during a cluster. The noise sounds like grunting. It is I believe exertion of air through Evan's diaphragm while having the spasm. It is usually very quick, and sometimes not very loud. Sometimes this noise can be simply misunderstood as reflux or coughing, and the actual seizures can be missed quite easily. It is always important to note anything unusual accompanying noises, such as strange body or eye movements.

Breathing: It wouldn't be uncommon for Evan's breathing to become rapid and noisy. Other times the rapid breathing could seem somewhat shallow. However, there has never been a moment for me to think that Evan was in any immediate distress due to a blocked airway. The increased breathing can be an indication of an onset of seizures.

3.) Eyes: His eyes can tell a ton of things about the moment. They are generally fixed in one direction during a cluster, his upper left. And even though he may move his head around while in the middle of a cluster between spasms, when the spasm hits, his eyes will train back to the upper left, or "shoot" back over. On occasion, Evan's eyes will become fixated on something too, and it is difficult to break his attention in that direction. I also notice his eyes to water frequently before, during and after a cluster of spasms.
I am sharing this with you because now I can look back and see some of these symptoms prior to that April 1st morning. Just like many other people, I had no idea that infantile spasms even existed. Having brief awareness of what infantile spasms are can help tremendously. It is important to know that seizures can be very personalized too; meaning that even though there are similarities from a medical or clinical understanding in types of seizures, each person might have that certain "thing" they do during an episode. Infantile spasms can be incredibly subtle, and there isn't always a physical sign of them. A sudden plateau of development followed by regression can be a hint that some interference is happening. An EEG that reveals hypsarrhythmia, but no clinical seizures observed can also be an indication of an onset of infantile spasms, or not yet a sign of hyps but clinical spasms. I also want to mention that it would not be uncommon for Evan to show some type of discomfort following a cluster of spasms. There were many times where he would even smile in the moments following them, like not even realizing what had just happened. These seizures can easily be misunderstood and misdiagnosed. More awareness and education is important.

Please let me know if you have any questions about Evan's seizures. I encourage you to ask whatever questions you may have about Evan's experience with infantile spasms. Again, I hope to educate and raise awareness for others who are unsure about infant seizures.

Evan's infantile spasms videos
To see the Hemi Foundation's infantile spasms page, click below!
For a listing of different neurosurgery presentations from UCLA, Click below.