My son’s first seizure was on his birthday, in March 2016. Of all of the party options provided, he opted for bowling with a few close friends.
That morning, I made him a gluttonous breakfast as he requested and afterwards we sat down in the dining room so he could open the first of his gifts, a walkie-talkie, which was no surprise. It has always been the only gift he has ever wanted for the past three years, for every birthday, every Christmas and every time in between when allowed to cash in on a percentage of wages earned through chores.
In the middle of opening his gift he sat down and looked at me to tell me he didn’t feel well so would finish opening it later. This was in stark contrast to the excited jumping up and down kid from just ten minutes earlier. I frowned and asked him what was wrong. He said he didn’t know, just didn’t feel well.
He had two hours to feel better before we needed to head to the bowling alley so I told him to go upstairs and relax for a bit. I cleaned the kitchen then went to check on him. He was pacing pack and forth and swallowing, said he needed to spit, so he went out on the balcony with his father to get fresh air.
Meanwhile, I’m watching him and feeling that something is wrong but not sure what. When he came back inside he sat on the bed facing me, I asked him to look in my eyes and then he looked towards the wall. At this point, I’m still clueless as to what is happening. One part of my brain is acknowledging this is not normal and the other part is wondering if he’s just upset about something and doesn’t want to look at me.
For whatever reason, I asked him to lay down so I could get a cold cloth, because in the movies a cold cloth fixes everything. When I came back he leaned over the bed to throw up.
At that point, I was fully alarmed and knew it was an emergency situation. Why? Because out of all of my children, this is the only one who never threw up as an infant, a toddler, or a young boy.
I looked at his father and asked him to call 911.
I asked my son to lift his arms so I could remove his soiled shirt and he went limp, his eyes started to move uncontrollably, his head turned to left, he started to drool and all of his extremities started to shake. I talked to him to give him orders or ask questions but he was completely non-responsive. By this time all of my other children had come into the room and started to scream and cry in fear. I asked them to calm down and told them everything would be okay, that help was coming.
I looked up at his father who stood frozen. He had not yet called 911. I screamed at him to snap out of it and call. He began dialing and when they answered he went blank.
Then I snapped and yelled at him to tell the operator that I didn’t know what was happening but that something was wrong with his brain and that he was breathing but that it was strained. I wanted to get him away from the frantic energy in the room so once I heard him relay the message I picked my son up to take him downstairs to wait for the ambulance.
To say I picked him up is an exaggeration. He was eleven at the time, and dead weight, so all I could really do was sit with him cradled in my arms and slowly meander down each step one at a time. I heard his father and my children crying and screaming in the background but I muted them out to focus on him.
He then experienced urinary incontinence. His head was still turned to the left, his eyes still moving involuntarily back and forth, unfocused, he was still shaking and breathing in a shallow and forced way so I needed to work to keep his head upright to ensure he could breathe through the drooling. I didn’t know if he could hear me or feel me but I rubbed his face softly, leaned down and whispered in his ear to let him know I was holding him, not to be afraid, that he would be okay and we were getting him help. I repeated this mantra of affirmations until the paramedics arrived.
When they saw him, the first thing they asked me before taking him from my arms was, “How long has he been seizing?” and I sighed in both relief and fear, for although this was still an emergency situation, it had a name. The answer, “almost 15 minutes”.
So began the research and study of seizures…
He has had several seizures since then and learned to provide forewarning, through mnemonic auras, which he communicated at onset. Protocol then became easier to follow with each subsequent seizure. In between them his father had a fall and concussion, but over the last several months they have muted considerably.
There are too many theories to count on the cause, effects (short and long-term) and remedies. In the end, after copious documentation and research, I determined his seizures are stimulated at the point of intense emotional suppression. I’m not an MD but sometimes doctor mom can diagnose in a way no MD can.
This kid is a hard ass. If he were to fall and break an arm, he would not cry and would go about his day as if it did not happen. You would only know if you shook said broken arm in a handshake to catch him wince. I’m not sure where he picked this up, how much is natural or how much I may have modeled through my own personality. The jury is out.
What am I grateful for?
- Friends who care enough not just to ask how things are but go the extra mile to help you in your struggle to find answers. That kind of caring holds a persons spirit up in a way that can’t be measured in words.
- The power of documentation. Without documenting the events before, during and after his seizures, I may never have understood a need to address the underlying emotional burdens he carries and had been unable to offload in a healthy way.
- Emergency response professionals. I’ve needed them throughout my entire life, but especially last year with four 911 response calls within a 90-day period. They are my heroes.
- Having been prepared to have grace under pressure.
- Health insurance. Medical bills with health insurance is no joke, but without it, hold onto your britches.