September 2012 Trevor had his first dizzy-spell-chased-by-a-single-vomit episode. When you have a child with catastrophic epilepsy it’s easy to blame seizures for everything. There’s this doctor saying that goes – when you hear hooves look for horses not zebras. I have the zebra child so this doesn’t ring quite as true for me. I know this. So I try really hard not to fall into that trap. Which is why the first time it happened I decided to convince myself it was a tummy bug. When he had another episode a couple weeks later I took him to the pediatrician.
“It’s that time of year,” they said.
By December I knew something was desperately wrong. He continued to have these intermittent weird episodes which involved loss of balance, speech slurring, eyes bulging and finally a single vomit followed by intense drowsiness. Beyond the dizzy spells he was having uncountable myoclonics each day too. I called the neuro.
“Doesn’t sound like a seizure to me but let’s check his levels and tweak his meds,” she said.
The first time I found him covered in vomit in the morning I positively freaked out inside. I know the numbers.
“Roughly 1 in 100 sufferers of severe epilepsy die of SUDEP every year.” - Wikipedia
The fragility of his life hit me (us) like a ton of very heavy bricks. We’ve always been very honest when it comes to the toll that this brand of epilepsy is taking on his body. Honest with each other, I mean. When we lay awake at night and talk about things that can only be whispered in the dark. Because to say them in the light makes them more real. When whispered in the dark you can try to convince yourself it was a dream conversation. So you don’t have to think about the reality of catastrophic epilepsy in the lives of beautiful little boys.
Until you wake up to find your son covered in what you’re now convinced is post-ictal vomit. Which means he had a seizure event in the night. And you never even knew. I swear last year I felt the breath of the Grimm Reaper on our home. We lived each day gripped in a wrestling match of faith vs. fear. I felt like I was talking to the wall any time I brought it up to people on his medical team. In desperation I even scheduled an appointment with a naturopath. I think he was a bit over his head. But he’ll come back into the story later.
Then Trevor had an event at school. And another. And more even still.
I remember feeling two emotions. Fear and YES! Because now I had witnesses. Now it was more than just an overly dramatic seizure mom creating drama.
So I emailed Dr. Rockstar.
“I would rule out chronic hydrocephalus” was his response.
My stomach fell straight through the floor to China. I had no idea there was such a thing as chronic, intermittent hydrocephalus. But the more I learned the more convinced I became. Oh my God…he’s going to need a shunt and it’s going to be impossible to prove! I immediately began pressing our local neurologist to investigate this idea. She sent us to the best local neuro-surgeon who scheduled an MRI. I waited on pins & needles for the results. Clean. Clean? How could it be clean??? His symptoms are right down the list of hydrocephalus! Dr. Rockstar even said so! I was mad and confused and so so worried. It felt like my son was slowly dying. He was having these events every couple of weeks. Plus, we were seeing those stupid myoclonics all.day.long. Every time one of the dizzy episodes hit it sent us into seizure parent panic-ville again. We started having stressful conversations about schlepping to Detroit again.
Somehow we decided to go to Disney instead. We couldn’t afford it. Looking back I know that I know it was an emotional decision. Trevor loves Disney. Our hearts were burdened with the weight of what could happen was happening to him. We needed to make another happy memory with him. Because if we didn’t… Dr. Rockstar assured me that if we were indeed dealing with chronic hydrocephalus, it could wait until after we hugged Mickey Mouse.
We wanted that trip to be magical. Like our Wish Trip was. And we did have happy moments. It’s just that the sad moments were more pervasive. His myoclonics were stronger than ever. I vividly remember a cast member moved us to the front of a character line. We choked down that guilty feeling when other parents gave us the “death stare” for skipping ahead. It was easier to swallow when a seizure almost knocked Trevor off his feet as he went to hug Chip & Dale. I’ll never forget the look of horror and heartbreak on the cast member’s face. In that moment, she had no regrets letting Trevor cut in line. And as a side note, SHAME ON YOU DISNEY . I’ve mentioned before that our trip ended with Trevor in the ER of Orlando Children’s Hospital after the most severe dizzy event he’d had to date. It was our first time calling rescue for him. Ever. In complete transparency, there was a lot of screaming and tears and panic filling our cabin while we waited for rescue to show up. I absolutely thought this was it. He was going to die at Disney. My big kids still have terrible memories of that night. Random things will trigger it for them and before I know it they’re in tears fearing for their brother’s life again.
That was when I lost it. Absolutely lost it. When we got home and I called the neurologist’s office. When the nurse was trying to give me the blow off yet again…I FREAKED OUT on her. It’s sad it had to come to that. But it did. And that was when the neuro began to get really serious about figuring out what was happening. She called the neuro-surgeon who agreed to consider placing a shunt IF we ruled out everything else. We scheduled an admission for the next day. Long story that I’ll spare you the details of…we wound up instead beginning a Dilantin wean at home. Even though his levels were always “fine” there was teensie tiny possibility that the meds were interacting with each other and causing overdosing when they peaked.
We decreased Dilantin and almost over night things began to improve. The myoclonics slowly scaled back. The dizzy episodes became less severe. His cognition and behavior all improved. He began to look healthier again. Slowly…cautiously…we exhaled. It took awhile for me to let go of the hydrocephalus idea. Especially because I trust Dr. Rockstar so deeply. But Trevor went months without having another dizzy episode. Actually, they just reoccurred when we finally weaned that last half an ml of Dilantin. That was when we checked his levels and discovered his Trileptal was DOUBLE what is considered safe for his age/size. We’ve weaned Trileptal a bit and the episodes seem to have disappeared again. Up until now it’s been a “theory” that the meds were interacting. With the whole Trileptal mess though…I’m feeling more secure that it was indeed a med interaction. Hydrocephalus will always be on my radar. But right now…I’m feeling okay. Okay…but convinced it’s time to explore alternative treatments…
My next post will share some of the alternative (hippie dippie) things I’m trying with Trevor.