Today I am breaking my silence, finally able to breathe and talk again after a whopping gut punch that took me down.
At Miles’ eighth birthday party several weeks ago, I saw what I knew in my heart was a seizure. Quick and small, imperceptible to almost everyone, it was unthinkably cruel to witness amidst the balloons and the laughter.
For three years and eight months, nearly half his young life, we have had a seizure-free boy. Yes, I was still counting the days of freedom and wonderment.
After what I saw, I felt that same old fight-or-flight daze return amidst the party guests. I took a few minutes alone for my silent primal scream, but then gathered up my smiles. We went on with the sledding, the potluck dinner, the piñata-smashing in the barn, the birthday cake, the gathering of so many people from near and far who come to honor our son at this time every year.
The next day, Sunday, my mother (who had seen the first event) told me she had seen another one just like it later at the party. She had refused to tell me as we celebrated.
As we approached Miles’ actual birthday that week, I was seeing more spasm-like events and now-implicated cycles of blinking, and scheduling a rush EEG.
It took three antiepileptic drugs plus the Ketogenic Diet to finally get Miles’ intractible seizures gone in 2009. There aren’t words for the burden that had been lifted as the seizures floated away and the daily hauntings finally stopped. We held steady on that perfect, freedom-giving treatment cocktail and enjoyed every second of our newly present child. He could do little, but he could be with us, and that was our priceless reward.
Two summers ago, Miles was then checked by EEG. His brain wave pattern had actually normalized. No words, just overwhelming joy and amazement at the power of what we had been able to do, supported by the best sub-specialist, for his severely compromised brain. No words.
Then we started ever-so-slowly peeling away the treatments, to see if Miles could fly seizure-free on his own without them. First the AED that quelled the infantile spasms, the devastating seizures that almost all patients outgrow by age five. Then the Topamax, which when combined with the Ketogenic Diet had caused him osteopenia and three long-bone breaks in two years. We then started slowly weaning the Keto Diet, keeping him on the last AED, Keppra, to be safe.
For the last eighteen months we have methodically dialed down the fat ratio of Miles’ diet. It was a long way to go from 4:1. With all faith and patience we made the slow changes that finally, this Thanksgiving, took him out of ketosis. It was nerve-wracking as hell; Miles had been on the Keto Diet since he was 11 months old. But he did beautifully, and suddenly he could have carbs and sugars and frog-leap normalcy around his tube feeds and oral-motor tastings.
Yes, Miles did beautifully coming off all his seizure treaments, until his birthday party. It was a very hard way to find out that our son could not fly solo.
Four days after he turned eight, Miles had the ordered sleep-deprived EEG. On the table, while the tech applied leads all over his head, my baby had a handful of spasm-type seizures deliberately provoked by the lack of sleep. It took all my strength to watch and be present as I held him down and he cried. I had kept him awake per the hospital’s orders, so ultimately I was making my boy seize, and we hadn’t even captured it because the machines weren’t turned on yet. Never had I thought we would be back in this ugly, complicated world ruled by misfirings of my son’s brain.
Nonetheless, we try to find our gratitude with our footing. We are thankful that the seizures are not frequent, at least for now. We are thankful that at this age they should no longer be devastating to Miles’ continued slow development. So we push the Keppra dose and keep the blessed Keto Diet treatment option in our back pocket. I alert my son’s extended team about his change in status, and accept their stream of condolences. I hold off on ordering a new Medic Alert bracelet for Miles that has “seizures” removed from it. I recalibrate and mourn.
Such is the nature of catastrophic epilepsies of childhood. The battle is apparently never, ever over. When you let yourself completely forget you were ever in it, and kick back because of the elapsed time and the proof and the trust you’ve built, you can get ambushed. But God knows you remember how to fight, and why.