A Whole New Kind of Seizure

I was in the middle of a board meeting last night when I got the call.  My wife had already texted me a few times during the meeting, so to get an actual phone call was already a cause for concern, and I backed my chair away from the table a few inches and answered it.  My wife, sounding as though she was either about to cry or just finishing a cry, said “Edward just had a seizure,” and before I even knew what I was doing I was sprinting across the courtyard to my house.

To understand my complete terror and despair at that moment, you have to know that Edward’s older sister has epilepsy.  We currently have it under control with the medication, and for now she is fine.  But for a while she was not.  I can say easily and without hesitation that Ruby’s weird, prolonged, and “medically disagreed upon as to the type and cause” seizures last year were the most terrifying and stressful moments of my adult life.  There is nothing in this world that is worse than watching your child suffer, and thinking that you might lose your child, and be sitting right there, helpless to do anything.

So we live in a state of constant fear.  Or perhaps that is overly dramatic.  We live in state of heightened alertness and constant worry.  Which, I guess, is just another way to say we are parents.  But we are always on the lookout for any signs of a seizure from Ruby, over-analyzing any moments of spaciness, and freaking out during all of those moments that she decides to ignore us or take too long to respond.  And to a lesser extent we are watching Edward.  Ruby was between three and half and four when she started having seizures (wow, has it been almost three years of this now…?) and Edward just turned three and a half, and we know there is a genetic component, and there is that underlying dread that both of our children will be afflicted.  So when I got that call it was some of the worst news I could have ever imagined.

Ruby was outside in the rain looking for me to tell me about Edward, and I said okay and ran right past her, which I feel bad about now, but I was in panic mode.  I dashed up two flights of stairs in one leap and when I got to the bedroom he was asleep, but still twitching a bit and definitely not himself.  My wife was on the phone with 911 and I texted someone at my meeting to let them know I was probably not coming back.

The EMTs arrived and were unable to wake Edward up, so they took his vitals and loaded him onto a stretcher and put him in the ambulance.  Simone went with him while I followed with the car.  Ruby stayed with a neighbor until my mother-in-law could arrive to watch her.  While Edward got all strapped in and the ambulance got ready to go, I just sat in my car, crying and praying angrily and desperately that we would not have to go through everything again with a second child.

When we arrived at the hospital I knew that he was coming back to us.  He was not yet fully responsive, but he was instinctively pressing every button in the ambulance and the EMTs had to keep telling him to cut it out.  As he was wheeled into the building he started to make some noises and was looking around curiously, and by the time he was moved into a bed he immediately tried to climb out of it and cuddle his parents.  And also press all of the buttons on the bed that move it up and down.

We knew that he had not been feeling well and that he had been running a fever since about noon, but when they took his temperature it was around 104, and suddenly, at least to the doctors, all was clear.  This was a febrile seizure.  A fever seizure.  Totally common in infants and young children.  Not epilepsy.  We got him some antibiotics and a lot of apple juice, and he was back to normal.  They cleared us to go home and that was that.

Our pastor, who I had texted saying I might miss a meeting the next morning, was in the parking lot with his wife when we came out.  He’d gotten our text and come over to find us, which was pretty awesome of him.  When we got home we had to comfort poor Ruby, who had seen her brother have a seizure and then had her parents rush off with no explanation, which was pretty scary for a six year old.  So we let everyone know that he was fine and that this was a one time thing that was not going to reoccur.

Does that mean that, in my heart of hearts, I now have no concerns about Edward and seizures/epilepsy?  No.  Though I know in my head that the doctors are probably right, the fear does not go away so easily.  I did not get a lot of sleep last night.  His fever was up again, and then down again, and it was terrifying.  He seems better this morning, and he is sitting here next to me right now, playing with Super Grover, which is a huge relief.  But I’m still watching him very closely.  And I always will.  Because even if he doesn’t have any more seizures, there are a still a lot of buttons around here that he is not supposed to be pushing…