Yaro’s Story
Epilepsy… as Yaroslav’s parent and caregiver I see it as a monster that hides under his bed, and every night it comes out to steal a peace of my precious boy.
Officially Yaro has been diagnosed with rare form of childhood epilepsy, Infantila Spasms, at 8 months old. Which led to the discovery of his underlined condition, a genetic disorder Lissencephaly. But I have suspected that something was wrong when he was about 6 months old. Although he was developing according to age, and was learning to sit at that time, he would present with sudden drops and patterned jerks. Yet not classic epileptic episdoes. It took going through pediatrician, two community neurologists and just showing up at Sickkids ER and exhaduarting symptoms to finally have him diagnosed. This started the intense treatment of the condition, as if left untreated IS can have a devastating distractive affect on the brain. IS is not just an episode of epilepsy, its an ongoing blizzard in the brain.
Of course, as parents we questioned if outcome would have been different if we were able to get the treatment sooner. But, steroid treatment with Anti-Epileptic Drugs (AED) did its trick. And for about 2 years we had our honeymoon with Epilepsy. No seizures, no spasms, no episodes of any sort. Just our curious, bubbly, smiley boy who was busy doing all kinds of intensives to help him develop to his best potential.
When, one day I put him down for a nap and went about unpacking boxes from our move when baby monitor caught movement. It was the return of clustered spasms. We did think if we ignore just this one episode things will get back to normal. And for a little while. they did until slowly day nap clusters started to occur daily. Reconnecting with neurology team at sickkids was heart breaking as now we were adding and increasing drugs, heavy benzos for my 3 year old. Trying to balance out development and sleepiness. With ocassional need to administer emergency dose of Lorazepam. After what Yaro would be restless, tired, but unable to sleep, just crying non-stop for 2 days. Yet, we didn;t want to be defeated by Epilepsy so we continued with twice a week physio and occupational therapy, speach and vision therapy and sensory play. I wanted to believe it to be just another stage that we need to get through and thinsg will get back to normal.
Yet, I found myself cancelling sessions more often then we were able to attand them due to 15 minute seizure clusters happening during night and day nap. Causing therapy to drop off from four session per week to two, to one, to having a break from therapy, to trying resume with sessions in a comfortable to Yaro intensity.
All of a sudden Yaro was taking a coctail of 3 AED drugs all on the maxed out therapeutoc dose, and still develop more seizure types that now affected him when he was awake and with the need to administer emergy dose. With last EEG explaining what is going on, Lenox Gastaut Syndrome. This felt like the ultimate defeat.
Having your child diagnosed with life limiting condition is hard, so you adjust your level of dreams and dial down expectations of your parenthood. You find new grind, new norm, new dreams and create new opportunities. But drug resistant epilepsy have stole that, too, from our family. My Google Photos shows me memories from last year, February 2022 and my Yaro is learning to stand independetly. Today, February 2023 my Yaro can’t stake awake for more then 2-3 hours a day. We have lost our son to the ongoing seizures, to the monster that this whole time was hiding under his bed and there seems to be no cure or hope.
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Edit: We received a call from neurosurgery scheduling Yaro in for VNS surgery on March 24. Its a chance to try and control his seizure and reduce all the drugs, and yet I am afraid to hope what if it will fail too.
The courage of those living with epilepsy,
inspires us and fuels our journey.
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