Meet Trevor – Part 1
Continuing with the Faces of Epilepsy series, I’d like to introduce you to my friend Danielle. Her son Trevor has Infantile Spasms, a life threatening form of Epilepsy. They, together with her husband Jonathan and older children Bristel and Toby, have been on quite a journey. Listen to her and I guarantee you will laugh, cry, and be amazed…
I should establish up front that I have tendency to take the scenic route. If you’re interested in gutting it out with me you might want to pause here so you can grab a cuppa joe. A box of Kleenex wouldn’t hurt either.
:: wink ::
Also, one quick thing before we take the plunge. Though I’ll keep slipping into the first person “I did this” or “I did that” – the truth is – I’m not on this journey alone. My mom is not able to contribute as much recently due to health issues, but during the most dire times she was available at the drop of hat to help me. In fact, Toby and Bristel lived with my parents while we spent almost a month in Detroit. I’m also connected with other Infantile Spasm families who are my virtual safety net and sounding board. We have support from our local community too – friends gave hotel points, air miles, money, many a ride to & from various sports for the big kids which allowed them to have a little slice of “normal” during some very “abnormal” stretches and even delivered meals when we finally came home after surgery. We have a plethora of prayer warrior support. Also, I married good. Jonathan is an amazingly tender husband. He supports me in many, many ways but a biggie has been taking night duty (Trevor would wake 5-10 times a night with clusters of seizures) which allowed me to have rest so I could face whatever battles the next day might bring. And of course, I have three amazing children who inspire me daily to love harder than I ever thought possible.
Take a breath.
Pull a tissue.
Cause here we go…
It so happens a new (to me) mom was at our weekly Homeschool Ice Skate. And as we were chatting The Story came up. To get the full effect of The Story one must imagine melodramatic music floating and weaving around the words. As it all came tumble bumbling out of me (minus the music)…I was struck by the absurdity that is The Story. Otherwise known as our life. If I weren’t actually living it…I would totally be rolling my eyes at the crazy lady telling it. Thoroughly convinced that she were an embellishing-spot-light-loving-drama queen. Or maybe she has a nasty case of Munchausen by proxy. But that’s just it. Every crazy unbelievable thing I said is true. Without a twitch of embellishment. If anything, I try to downplay the drama so I don’t scare potential mommy friends off. I don’t know about you…but I find that The Story has a way of freaking people out. Like it’s catchy. Or that I’m somehow super human which makes me un-relate-to-able. But these other moms were just listening. A little slack jawed. But listening. And I couldn’t help myself – the irony and absurdity tickled my funny bone. I started (inappropriately, I’m sure) laughing.
Like, double over. Hold my side. Belt it out. Laughing.
The Story sounds so entirely fictional.
NY Times Bestseller wanna be fantasy. Jodi Picoult don’t you dare get any ideas!
Even if it does read like Hollywood B movie material.
I mean…we have The Bush Factor. My husband and I, along with our two oldest kiddos, were missionaries once upon a time. Trevy too – but he was just a baby bump at the time. A time that feels like another life altogether but was really just a handful of years ago. We still carry on rusty Swahili conversations with each other just because we can. And oh but do we have stories to tell. Malaria in the middle of nowhere filled tales. Tales that draw Romantic hearts to foreign countries. Stories that are fuzzy around the edges now. Because they happened a life time ago.
Not the seizures that most people are familiar with. Not the kind Hollywood is embracing lately. Not the kind your favorite Aunt Sally has. Unless she has the catastrophic kind.
I’m not trying to offend or diminish controllable epilepsy. Any life with seizures brings with it stress.
But catastrophic epilepsy is another breed altogether.
We’re talking seizures on steroids.
Seizures that you don’t ever want to know exist. And when you do, you hug your healthy children that much the tighter. And if you already do, your heart is knitting with each word you read.
At seven months old Trevor had his first cluster of Infantile Spasms.
We were literally two weeks from returning to Tanzania. Luggage half packed. Vaccinations and passports – all systems go. In fact, Jonathan was in Delaware loading a container with supplies we intended to use during our second term as (what we believed would be) career missionaries. I stayed behind in Rhode Island with my parents. Schlepping three rugrats across several states just didn’t sound fun. If you’ve ever driven I-95 through NYC – you get it. Also, I needed to take the kids for their flu shots and show the pediatrician these weird movements Trevor kept doing. Jonathan was the brilliant one – he suggested I take that video clip the next time an “episode” happened. I had tried verbally explaining what I was seeing – the doctor thought it was reflux. A common misdiagnosis. He told me to try a soy based formula. Which, of course, did not help. Trevor was becoming increasingly cranky during the day and sleeplessly irate at night. Symptoms. The first cluster we noticed was on a Monday. By Wednesday I was a basket case. I knew something was wrong – just not what. How in a million years could I have known?
It took three phone calls to the pediatrician. The first two were toned down because I didn’t want to sound like a crazy mommy. The third time – the mirage no longer mattered – I told the doctor he needed to see me now. That I’m not a new mom and something is desperately wrong.
He agreed to see me after hours.
I could tell. The way the lines on his face shifted as he watched the video clip. He asked if he could show it to a fellow doctor because in his 20 years of practice he’d never diagnosed a child with what he was suspecting. My stomach was in my toes. Sometimes I try and picture myself sitting there. All pins and needles. And innocence. I was such a different girl then. Less serious than I am now. More carefree. Not as cranky. Skinnier too. I knew something was wrong – but I never imagined just how much our life was about to change. Never. Because until you face them, you can’t imagine the monsters hiding behind the name tag: Rare Disease. When he came back in the room I teased,
“Just promise me it’s not Tourettes!”
His smile was probably tighter than I remember noticing when he assured me it wasn’t Tourettes.
“Well then, promise me I’m not missing my flight back to Africa in two weeks. Because as you can see, I really need to work on my tan…”
Humor is my nervous tic.
The rain was cats and dogs (I warned you – B movie material). It was late – six or seven. When I called Jonathan. He sounded busy and distracted because he was. There is an art and madness to loading a container. Making use of every crevice. I was barely holding back the flood when I asked him…
“Do you still believe God has a Plan in all things?”
I knew what his response would be even as I told him he needed to come home. Now.
And he did. He left the packing to others and drove through the rain. Not stopping until he was with me. It was sometime after midnight before we were holding each other. I had already surfed more medical speak than any parent ever wants to know could sneak up and engulf their child.
Those beginning weeks are blurry now. So much life has flowed since…eroding away bits of the past. I know Trevor had an EEG which confirmed the diagnosis. I know our dreams of bronzing away our life in Africa were shattered.
(this was actually after he’d started treatment – note the ACTH puffy cheeks – but was the earliest EEG picture I have)
I also remember our insurance denied Trevor the frontline treatment. There are only a few and ACTH was the most promising. A handful of months before Trevy was diagnosed, a company (Questcor) who had not developed but had purchased the drug (Acthar) was successfully given the go-ahead to change the price point by utilizing the Orphan Drug Act.
Overnight the price increased from approximately $1,500 (just put in on my credit card) per vial to $23,000 (now we’re talking college tuition) per vial.
Which is another story altogether – I testified against Questcor before the Joint Economic Committee the summer of 2008.
Trevor’s course recommendation was for 5 vials. Possibly more.
We spent over a week fighting with our insurance company for coverage. At one point they even stopped shipment. They also threatened to not cover any costs incurred from side effects should we move forward without approval. It was hell. Emotional hades. Absolutely gutted and helplessly holding our broken, seizure saturated infant. Knowing that each seizure was stealing his cognitive and physical development. Unable to access the drug which the doctors were telling us could possibly save his life.
We were a wreck.
Ultimately, and after hundreds of unnecessary seizures and emotional turmoil, we finally had the treatment in hand. Liquid Gold, Jonathan called it. I thought Hope in a Syringe. Acthar is a steroid gel which is injected into muscle mass – typically the thigh. I delegated the needle handling to Jonathan. Because I’m a wimp. He always said he was more afraid of dropping the $5,000 syringe than actually giving the injection.
(in the small boxes up front are two 5ml vials)
There is no describing how it feels to swaddle your baby as tight as you can. Leaving one little thigh exposed before laying your body over his bitty one. The goal being – eliminate as much of the struggle as possible. I would close my eyes and hold my breath until I heard the scream. The needle is so very big. And the gel so very thick. Jonathan says it took more force than he was prepared to use. It goes against every parental instinct. Your heart hardens over time…but that first injection had everyone (home health nurse included) in tears. We had to give him one injection daily for 5 weeks.
Four shots in, Trevor was seizure free.
He did experience some known side effects including crankies, weight gain…
(he earned his nick name Heavy Trevy)
along with high blood pressure which required medication to keep controlled. Try explaining to the pharmacist why your 7 month old needs Enalapril.
But he was seizure free. The benefit outweighed the risk.
I wish that were the end of the story……