Coming to Terms with my Child's Epilepsy

It's amazing.

You wake up.  Your family is normal.  The kids fight, they argue and then they're playing networked computer games on steam.

We had just finished our big Christmas push.  The twins had their birthday, Christmas happened, The Senior had her birthday (because my second child is so old, she will be graduating!  EEK!!!)  We had just recovered physically, trying to recover financially from December finances, when the oddest thing happened.

One of my twins woke up with a huge, gigantic goose egg on his head.  On top of the goose egg, was a huge scrape.  We're talking a whopper scrape that covered a third of his head.  When asked, "Hey, what happened?"  Kiddo would shrug and say, "I don't know."  and we'd press, asking, "No really, what happened?"  and he started to get mad, because he sincerely did not know how the scrape had happened.

We moved on.  He clearly did not know. Why frustrate our youngest teenager?  At the same time, the question remained and we pushed it aside because we didn't know how to process our kid not knowing, in anyway, how he received a goose egg size lump with scrapes on top.  The whole thing made no sense but we went through our day and then our week and as the wound healed, we worried less about him.

Almost exactly a week later, extremely early in the morning, one of our twins came screeching up the stairs, hollering at the top of his lungs "MOM MOM, ****** is breathing like Uncle Scott did Christmas day!!!!  Now background information, my brother not only has epilepsy, that's been managed extremely well for decades but he also struggles with OCD that makes him compulsively drink, to that point that he washes out his electrolytes.  Those seizures (which can happen if his liquid intake isn't carefully monitored.) have happened a few times over the past decade and Christmas day, his OCD was out of hand, much more so than usual.  Scott snuck water in the middle of the night and had a seizure during Christmas dinner.

Scared my kids to death.

As we called 911, and my mom and I made sure my brother was safe, we talked to my children.  We explained that Uncle Scott was fine and that even though this was scary, he would be fine.

So when my son came running up the stairs, at six am and compared his identical twin's breathing to his Uncle Scott's when he had the seizure, my heart skipped a beat and I went into a mom panic.  Running down the stairs, I found my boy on the floor in the computer room. He clearly was postictal (the time period directly after a seizure when the individual is recovering) He was non-verbal, it took a full five minutes before he opened his eyes.  He was unable to respond to questions.  Kiddo, kept trying to stand up, but he was shaky and I was afraid he'd fall, stumble and get hurt.

While keeping him down, I had kiddo's twin run upstairs and get their dad.  I also noted that on the floor, that was some blood and liquid.  I assumed and it was later confirmed that kiddo had chewed his mouth up while seizing.  I also soothed kiddo's twin repeatedly.  Kiddo's twin was beyond distraught.  I don't think kiddo's twin realized how much his brother means to him.  With a wave of clarity, we all realized that wasn't his first seizure.  That still visible lump on his head was a seizure wound from his bed.

I sent out the necessary texts to alert my bosses that I would be taking a sick day.  My husband sent our oldest teenager on a mission to help find shoes and clothes for the kid, that had finally stopped fighting to get up, and tightly curled up next to my knees, wrapped burrito style in an extremely fluffy blanket.

We decided to self transport.  A trip to the ER was a given.  So many different things could cause seizures.  We needed to eliminate whatever we could so we could move forward and help our child.

As we prepared for our hospital trip, I made a decision that I seldom make on behalf of kiddo's twin.  I highly prioritize school.  My children go, with little leeway offered to stay home.  Free days do not happen at my house.  Mental health days do not happen.  School is THAT important.  However, as I looked at kiddo's twin, he was still, so, visibly, upset.  I gave that child a mental health day and had his older sister drop him off at my mother's house as she went to school.  She would go to school, while concerned, she felt she'd be alright and she'd take her freshman brother to school.  The highly analytical 14 year old, shrugged, and said, yeah, he was fine concerning what was going on. That kid sooooooo went to school.  but the other 13 year old, he got a mental health day.

So arrangements were made and we took kiddo to the emergency room.   Vitals were taken, blood was drawn, kiddo was given a CAT scan.  The ER doctor offered anti seizure meds but that seemed premature to me.  We needed to pursue and make sure it was the right choice.   So we left the ER with no clear answers but some definite diagnosis were crossed off.  Our kiddo's brain was clear, that was not any malformations, tumors and unusual readings.  His blood tests also eliminated other outlying causes.  This wasn't a metabolic issue, like my brother sometimes has.

At this point, no one said it but my husband and I knew our son, if the seizures continued, has epilepsy.

Our next step was a trip to kiddo's regular doctor and at this point, we had only two confirmed seizures.  Our kiddo's doctor has known our family for over two decades, since our oldest was six months old.  We have a good working relationship and similar ideals on a more conservative approach to medicating and diagnosing problems.  I appreciate that relationship and that I don't have to explain my feels and that this doctor, while giving all the choices and the pros and cons of those choices, in his head, already knows which directions I'm most likely to chose.

The only choices on that day, a mere four days after the ER visit, was if we were scheduling for the pediatric neurologist now or if we were waiting to see make sure and see if there was really cause for scheduling.  In other words, were the two seizures a fluke, or would kiddo have more?  It's a legitimate question.  It's a weird thing, a kid's brain.  Seizures can happen once or twice and then never happen again.

I will be honest, my husband and I, while we truly don't fight, that doesn't mean we don't disagree and on this, we disagreed.  I felt, in my heart, we needed the ball rolling on the neurologist.  It's ridiculously hard to get an appointment with specialist and I felt that truly, it was warranted.  My husband wanted to wait and see.  This wasn't the first time.  Waiting and seeing is his go to reaction.  As I said, we don't fight and I did not push my opinion because in the end, we'd get to where we needed to be. I agreed to wait.

A mere four days later, he had another seizure and a mere twenty four hours after that, he had another grand mal. Monday morning, I called and started the process to get our son into the pediatric neurologist.  We were quickly put in four weeks later (Because that's what happens when seeing a specialist.)  Kiddo had more seizures, mostly about a week apart until we were finally able to get him in.  We talked quite a bit and in the end, the only part that really mattered were the one's stated by the doctor while he looked at our son's chart and out of his mouth flowed the words "Your son meets all the criteria of epilepsy."

For a brief moment, as our reality shifted as the new "normal" settled into the room.

So many feelings and emotions go into a diagnosis.  How does this effect his future life, what does this mean for his present life, what steps will we have to take to keep his life "normal."  For our son, the real fear of having a seizure at school brewed in his mind.  Not understanding what was happening to him, having his twin freaking out, telling him how scary it was, anger towards anyone that walked by, because his emotions are so incredibly big right now.

As hard as it is as a parent, realizing our reality for our child, that pales to the emotion our child feels, in dealing with that reality.  The truth is, we're at the sidelines.  Oh sure, I'm on the phone with doctors, I'm monitoring meds, sometimes having to switch dosages and prescriptions within days of each other but, but but, I'm not the one having the seizures.  Going to school while tired, worn out, with a headache from a seizure in the morning.  He has to fight the battle.  I can only give him the needed tools.

We had a moment a few weeks ago.  Kiddo had shut down, He had decided he wasn't participating in track and field the next day during a meet.  We had switched seizure meds once already, as the first one we tried made kiddo incredibly angry and very physical.  It wasn't something he could live with and it wasn't something his siblings could live with either.  His mood after switching meds was definitely better but he still seemed off and at the drop of a hat, close down and refuse to do (whatever) track, movies, visiting family, going for ice cream.  This was one of those moments.  He wasn't doing life.

I laid on the floor in my sewing room, right in front of the door so he couldn't leave and started talking.  I told him, as tears rolled down my face, how much I hurt for him.  That I hurt, seeing him struggle.  That I ached knowing that he ached.  That his feeling were real and big, and he had every right to feel whatever he was feeling.  My boy inched towards me, finally leaning into my body and with our arms around each other.  We cried.  And then we laughed.  And then we cried even more.  He knew he was loved, no matter what.

He did go to track. I won't say that it's getting better, but I will say that he knows he has us.  Sometimes he asks the questions that we can't answer.  He asked us, right after being diagnosed, if he'd grow out of the seizures.  We had to be honest, he could, or he could not.  There was no way for us to know at this time.  I'm glad he felt safe enough to ask.

What really is interesting, is how my history of this kiddo, and his twin has impacted our feelings, our faith, and our understanding of what's really important.  While talking in private, we've both expressed how minor seizures really feel, when we know the odds those guys faced before they were even born.

They both had a zero percent chance of living without interventions.  The serial amnio reductions used to manage the Twin to Twin Transfusion Syndrome gave each boy a fifty percent chance of living.  While the amnio reductions gave the guys a chance to live, it also carried a twenty-four percent chance of cerebral palsy.  Each boy had risks for specific birth defects.  Having faced that together, knowing what the worst could be, because we've been there, we've stared hopelessness in the face.  We've accepted insurmountable odds and have found peace knowing that we weren't alone and that together, we could navigate the toughest challenges.

Balancing meds is hard.  Finding what works is frustrating, especially when something really doesn't work along the way.  But our child is living.  And with our help, he will live his best life.  I'm not saying I won't cry again.  I'm not saying it's easy.  I'm saying that we'll do this, partly because we don't have a choice but also because this kiddo, was worth fighting for when he was only a nineteen week old fetus and he's worth fighting for as a thirteen year old moody teenager.