This is a piece I wrote about my son Bernie back in September, around the time that he turned five. Writing this (and sharing it on Facebook) was a very cathartic experience for me. It helped me process some emotions and feel less isolated in my experience parenting a kid with epilepsy. Copying it over here from the google doc for posterity.
Originally written 9/6/2024
Our kitchen is covered in a sheen of oil. So is our five year old’s booster seat and placemat. These things are easy to wipe down when they get gross enough; the numerous shirts and shorts with oil stains are slightly trickier. When I think of the moms I’ve seen in countless laundry detergent commercials over my lifetime, I wonder if getting those stains out really is as satisfying as they make it look. I’ve never had the energy to bother.
keto lyfe
Our son, Bernie, follows a strict high fat, low carb diet – the ketogenic diet. The oil is omnipresent. If it seems insane to put a little kid on a restrictive diet, you’re right. But for Bernie, every meal he eats needs to be 90% fat in order to maintain a state of ketosis to prevent seizures. They’re not entirely sure how it works, but there’s been some research that burning fat instead of glucose increases the neurotransmitter GABA, which balances out the neurotransmitters that cause seizures. For some unknown reason Bernie has an imbalance.
Bernie had his first seizures in January of 2023. The day before, I went to my first doctor’s appointment for my second pregnancy. I had been sick and miserable, but was happy to learn that I didn’t have twins (phew) and that the pregnancy seemed healthy. Bernie has autism, and had spent the previous year working one on one with a therapist to develop his language skills. I still carried some guilt that his speech delay had been my fault, one of the many reasons I now wish I had gone to a therapist sooner. My OBGYN set me at ease and I went home finally a little excited to be pregnant.
The next day Bernie stayed home from daycare with a slight fever. After putting him down for his nap, I noticed him jerk unresponsively just as I was about to leave the room. I had never seen a seizure before – the only association I had with epilepsy was an inside joke with my friends twenty years earlier in which we pretended to seize after seeing flashing lights. I spent several minutes failing to get his attention, then starting panicking when he immediately fell asleep afterwards (a very common side effect of a tonic clonic seizure). The doctor in the ER concluded it was likely a febrile seizure and assured us this was fairly common for sick kids. Two weeks later he had more tonic clonics and the doctors were less reassuring. The earliest neurology appointment we could get was almost a month away. While we waited, we began noticing strange movements: Bernie’s hands would unexpectedly fly up and eyes roll back for an instant, and then he’d go back to what he was doing. These events, called myoclonic jerks, would become an unwelcome part of our daily lives for the coming year.
waiting for an MRI
The name epilepsy was coined by the Greeks; it is derived from the Greek word meaning “to seize, possess or afflict”. Seizures were believed to be the work of evil spirits until the philosopher/physician Hippocrates proposed that the condition came from natural as opposed to supernatural causes. I can appreciate the misconception. Although death from a seizure itself is rare, watching one certainly evokes death, dying, general “otherworldly”-ness. It’s terrifying. Even a year into this, when we noticed our son seizing on the monitor, my husband and I ran into his room and tried to shake him awake instead of keeping him on his side and comfortable like you’re supposed to. The urge to prove that the person seizing is still alive can take power over logic.
After receiving an epilepsy diagnosis (he has Myoclonic Atonic Epilepsy) on Valentine’s day 2023, we started Bernie on Keppra, one of the most common anti-seizure drugs. We saw no improvement. Six weeks later we started him on Depakote, a mood stabilizer often used to treat bipolar disorder. This drug appeared much more effective, and for the next three months we thought we were in the clear. In June his myoclonics flared up again after a trip to the mountains, illuminating how thinly controlled his epilepsy actually was. We spent the final six weeks of my pregnancy scrambling for more control, and finally got it (by increasing Depakote) the week our second son (Ralphie) was born.
big brother energy!
That month we got off the waitlist at Children’s hospital in Denver. In addition to now having a designated epileptologist, we also had access to the hospital’s Keto Clinic – a staff focused on the diet for seizure control. Our epileptologist suggested we experiment with the drugs a little more before trying keto, so we spent the next few months increasing depakote and navigating seizure spikes and medication side effects. Bernie started losing muscle tone in his legs and arms. He began falling more and seemed constantly off balance. As parents, we were gradually losing our sense of control again. The sleep deprivation from having a newborn didn’t help.
In October of 2023 we hit our breaking point. The month started with COVID and ended with another respiratory infection. Both illnesses caused Bernie to be completely depleted for a week. Dan and I decided it was finally time to try keto, though we wanted to wait until after our Christmas travels to start. The day after Bernie went back to school from his sickness, seizures spiked again. We decided to start after Thanksgiving.
One of the hardest parts of navigating an uncontrolled seizure disorder is the waiting (Tom Petty agrees). When you try a new drug or treatment, it usually takes a month minimally before everyone can agree it’s not working. That month is excruciating, especially when there are side effects. The biggest side effects for keto are acidocis and constipation, the former of which can occur if you enter ketosis too quickly. We started keto after Thanksgiving at a 1:1 ratio (one part fat and one part carbs + protein) to prevent this. You’re not typically in ketosis until you’re over 2:1, so we spent the first month gradually increasing the fat, getting used to calculating macro ratios using the Keto Calculator and measuring food.
By January I was feeling desperate. I had started back at work after maternity leave and was overwhelmed by the diet now that the fat was taking over. On top of that, his seizures weren’t getting better. We needed a break, and we needed it in the form of keto doing its job. Our dieticians suggested we go up to an even higher fat ratio, and at the end of January we hit 3.5:1. Within two days the seizures stopped.
time to eat
There’s a level of exhaustion that is universal to parenting, especially in the beginning, when your time and sense of self are so drastically different than they were a few years (or months) ago. All you want is one day off, to truly reset, and it is always just out of reach. Keto is this amplified. It’s comically hard (especially for two people not particularly good at cooking). Not only are you calculating, measuring and preparing a meal, but you also have to get a four year old to eat it. It’s easy to lose yourself in such a lofty endeavor. The exacting nature of the diet fuels perfectionism, as well as the false hope that you’re only one day away from everything clicking into place. Even resources provided by those who paved the way – cookbooks and blogs written by talented mothers – can be depressing to read when you know there’s a 75+% chance your kid will not eat anything you make.
A few months into our diet, I posted on a Facebook group for helping/hiring immigrants in Denver, one of the major cities that received thousands of migrants in recent years. I was looking for someone to do yard cleanup work. I got many replies, but the one that caught my attention was a young woman named Maria who attached a picture of her family – two girls under age three. The pulling of the heartstrings worked on me, and I hired Maria for regular house cleaning. During her early visits she exuded gratitude and relief to be in such a supportive country (they had just emigrated from Columbia), but in recent weeks her tone has been more of desperation. Her husband’s work dried up. The food bank they’d gone to closed. There’s a darkness that looms. They can barely afford to eat, let alone eat well. I send them home with our extra pasta and rice, food that we don’t go through as quickly as we used to.
I can’t help but imagine what Maria would do if one of her kids had M.A.E. Keto has been effective, but there’s an element of the diet that feels extremely classist. Since Bernie is forbidden from eating cheap snacks (too high in carbs), the only pre-made snacks he can eat are expensive and hard to come by. The most successful options end up being homemade foods high in mayo, butter or oil that mimic “normal” foods to appeal to kids. Bernie used to be an adventurous, voracious eater, but nine months of keto has made him picky and indecisive – we often end up composting an entire day’s worth of food. This is not just a waste of money and food, but it’s also a waste of time. Calculating and measuring food can be all-consuming, especially if you’re trying to appeal to the whims of a picky eater. It often feels like my high paying, flexible tech job is bankrolling Bernie’s seizure control. It’s a stressful and depressing realization.
From my experience parenting picky eating pre-keto, I know that the most effective way to handle food issues is having us all eat the same thing together, something that was very achievable a short year ago. Now the thought of having two versions of the same meal ready by 6pm every night is a canyon-sized stretch of the imagination. These days, the cooking energy is spent on Bernie, and my husband and I tend to scrounge up frozen meals or takeout after the kids go to bed. Most of my weekend free time is spent preparing food for school lunches, brainstorming new meal ideas, and hoping that at some point our food routine will click into place the way it did when he hit other eating milestones, like switching bottles or introducing solids. Some days it feels attainable, but most days it does not.
And yet…we are currently in the coveted stage of “seizure freedom”, said to be achievable by ~half of Keto epilepsy cases. In so many ways, it’s an amazing place to be. There is a sense of hope and normalcy that escaped us in 2023. His speech has drastically improved, he doesn’t fall nearly as much, and he’s starting to regain some of the fine motor skills he lost last year. I have more and more confidence that he will catch up with his peers developmentally, and that he will live a very fulfilled and happy life. The path forward is still uncertain. His epilepsy could disappear within a few short years, or it could stick around indefinitely. Either way, we found a way to control it that on our worst days feels hard and best days feels miraculous.
Last month Bernie started kindergarten in a general education classroom. In the mornings he’s excited to go to school, to learn, to grow. I’m still not sure if we’ll ever get good enough at this for it to be easy, but hot damn, every day that goes by without seeing a seizure is worth it.
first day of kindergarten
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