Trying to move forward in the midst of setbacks


This is my son’s birthday week and it has been about one month since we have been quarantined due to the coronavirus. It’s interesting seeing all the ways families are celebrating birthdays in these times and what we are doing with this new normal. If you have read some of my posts about my son, you will know that he has his own challenges that he is going through.

For those new to our site, my son has a form of epilepsy, Panayiotopoulos syndrome, which means he suffers from seizures and is said to outgrow them in 4 – 6 years. Last November my son was officially a year without having a seizure, but our celebration was cut short when he had a seizure a few days after passing that milestone. We had a scheduled EEG in April, but due to the virus, our appointment was canceled. Since then he has had two: one on March 19th and one early this morning April 14th, a day before his birthday.

While these breakthrough seizures are unexpected, the seizure he had this morning scared us almost as much as the first time he had an episode.

This photo was taken by my daughter
This day was just like any normal day. The only new thing in our schedule was the first day of E-learning began for both my son and daughter. It was interesting to see them in their new learning environment and wondering how the rest of their semester is going to play out. At night we ate dinner which was leftovers from the night before and then watched some television before going to bed.  
This night we slept in the living room on the sofa. Our sofa is really comfortable and my children and I like to sleep there during the weekends sometimes. My son laid next to me and it seemed like it was going to be another good night. 
Around 4am I felt my son hitting me in the back and at first thought he was adjusting himself. I don’t know what it was but I just felt that there was something about his movement that felt off. I turned to him and called his name and there was no response but I heard a smacking sound. I said his name louder and it seems the tone in my voice awoke my daughter and I asked her to wake my wife up. I grabbed my son and carried him to the bathroom. 
In the light of the bathroom, I saw my son’s eyes were fixated to his right. They were so far to the right that you could hardly see the brown of his pupils. The smacking sound was coming from his lips, it sounded more like a clicking sound, but it was his lips spitting the saliva from his mouth. As I held him there his right arm was just dangling to the side looking weak but was moving strangely back and forth. 
As I held him in the bathroom, my wife and I were repeatedly saying his name hoping that he would snap out of it. I started getting flashbacks of that first time and my eyes started to water. My daughter was standing in the hallway with the timer on her phone tracking the minutes to see if we need to give him his shot of Diastat, his emergency medication for when his seizures are over 5 minutes. 
We were about to get his shot ready when he started coming out of it. He tried talking but his words were not making sense. He started to focus on my wife and that’s when tears started coming from his eyes. It was like he knew what was happening to him, but his body was still not completely his. He was not able to stand up on his own because the right side of his body was weak. He tried to tell us something, but all that was coming out was the word “I”. 
After a few tries, we figured out that he had to use the bathroom and we sat him on the toilet so he could relieve himself. Pretty much the whole time we had him in the bathroom we were wiping the spit from his mouth and trying to get him to stand on his own. We did a few tests with him to check where he was: we asked him to squeeze our fingers with both hands, we asked him to walk towards us and we asked him to name the people in the room. 
What felt like forever only lasted about 10 minutes from when it started to when he regained consciousness if that’s the right way to say it. My son walked to the bedroom with my wife and prepared to go back to sleep. My wife took a towel and one of those kidney-shaped bedpans to the room with her. Usually, after my son has a seizure he throws up for a few hours afterward due to an overproduction of saliva during these episodes, but this time it was different. My son crawled into bed and just laid there and slowly fell to sleep. No throwing up, nothing. 
We let him sleep in the next morning and emailed his teacher that he would not be attending the morning meeting, but will attend the afternoon one. When my son woke up he was like nothing happened. Although he knew he had another episode, he was hungry for breakfast and sad that he did not attend his morning meeting with his class. Later that morning, my wife called the neurology department at Lurie’s Children Hospital to inform them of his latest seizure so his records can be updated. 

Since his first seizure, we were told that he will outgrow them in 4 – 6 years, but these breakthrough seizures make me question that timeframe. I feel that we are going to go through some bad ones before we get to the point where he will be seizure-free and in the meantime, I pray that they will not get any worse than the one he had this day. What was supposed to be a memorable week had become memorable for another reason, but we will not let this put a cloud on his special day.


To think a year ago we were celebrating his birthday at Star Wars Celebration at McCormick place. At the event, people were giving him high fives and wishing him a happy birthday. We even had “cake” on the Millennium Falcon. It’s crazy what a difference a year makes and although we can not celebrate his birthday like we wanted to, we are going to make sure he has a great birthday and we will get through this.

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