Balancing Seizures And Side Effects

Shortly after my son wakes up each morning, I walk with him in to the kitchen. I open up the basket that sits on the counter and grab his weekly pill organizer, popping open the compartment for the day.  I use my finger to push around the pills and find the morning dose of anti-epileptic medication, pulling out six pills and placing them on the counter. My son, still groggy, rubs his eyes as I fill up a cup with water from the fridge and hand it to him. His little fingers struggle to pick each pill up from the counter, but he gets them all, puts them in his mouth and swallows them with the water. “Good job, buddy,” I say, as I rub his head and walk with him in to the living room.

This is how we start every day. Some days, it’s my wife that goes through the routine, some days it is me. But every day, it’s my son that wakes up and starts each morning with a cocktail of medication, and ends each day the same way.

epilepsy seizures side effects

Borrowing a term from my corporate life, getting onboarded in to the epilepsy lifestyle, one learns that 60-70% of people are seizure-free with the first anti-epileptic drug (AED). If the first medicine doesn’t do the job, there is a less than 10% chance of becoming seizure-free with another AED. After 3 failed AEDs, there is less than a 5% chance of becoming seizure-free with another AED. We’ve tried at least 7 medications, not including the short-term ones that were used in the hospital when my son went in to status or the behavior and sedative medications. With each medicine came a dwindling amount of hope but a compounding list of side effects.

Medication Side Effect
Kepra “Kepra Rage”; behavior
Trileptal Exacerbated myoclonic seizures.
Depakote Stopped along with dilantin because of toxicity.
Dilantin Toxic, sever ataxia, other bad stuff.
Zonegran Behavior, ataxia
Onfi Suspect behavior, attention, balance
Depakote (Again) Toxic (again)
Lamictal TBD

The behavioral side effects are the hardest to endure…watching the chemicals that keep my sweet, funny son’s brain from seizing turn him in to something else. We fed him medication that caused hours of having to hold him down and avoid the spitting and punches and hurtful, angry words in order to reduce the number of seizures he was having.  After two, three, or four hours, he might come back to us and we would watch him cry because he truly couldn’t control what his body and his brain were doing. It’s impossible to explain to a five year old what just happened, so we would hold him, and comfort him, and wait for the next barrage.

In the last few months, partly because we started the ketogenic diet, we have removed a number of medicine from his cocktail, and his behavior has greatly improved. But his neurologist added Lamictal last month to help with an increase in nocturnal seizures and to hopefully wean him off Onfi, which might still be causing some behavioral and attention-related side effects. There should be fewer behavior-related side effects with Lamictal, but getting the medication up to an effective dose takes time…what Lamictal lacks in terms of behavioral side effects, it more than makes up for with physical side effects of introducing it too quickly. Fortunately (knocking on wood), we have yet to see any signs of a reaction, so we will stay the course and hope for the best.

Easier, But Not Easy

We’re two months in to the ketogenic diet. The doctors say that it’s working. We’ve been able to go down on meds without a significant increase in seizures, although the reduction was more due to my son being toxic on the meds rather than the gradual weaning of meds that sometimes follows the diet. But we also haven’t been admitted to the hospital in months, which admittedly is a pretty low bar.

His behavior is better, but it’s still bad. There is less screaming, and the outbursts don’t last as long, but they still happen. And his impulse control is still nonexistent. We’ve had to add a chain lock to our front door to prevent him front running out on the street, which he did. We can still see it in his eyes, when his brain gives up on making any decision and following natural impulses that, for a 5-year-old, involve flipping, and running, and hitting.

It’s still hard to look at him and to see him struggle. It’s still hard to do something fun only to have it end with a seizure because his body gets too tired to prevent it. This picture was taken at a festival in the park next to our house. About 30 minutes after it was taken, he was on the ground having a seizure, concerned bystanders offering to help.

easier but not easy epilepsy seizure ketogenic diet

In the past month, we’ve gotten help to come during the day. We’re also getting additional services through the hospital and through the state. We are getting better at managing. Managing his routine. Managing his seizures. Managing his behavior. The help and structure have made the day-to-day easier.

Easier, but not easy.

Like I imagine so many other families are dealing with, epilepsy has its own gravity that forces everyone to exert much more energy to keep moving. Every step is harder to take. Everything takes longer. Even the simplest things are exhausting. I wish I could grab my wife and son, strap on some rocket boosters, and break free from the unrelenting pull of gravity, but so far, we continued to get pulled back by more seizures or other complications.

Easier, but not easy.

There are families that don’t get easier or easy, and I’m grateful for the progress that we have made and for the support that we continue to receive. I’m still hopeful that all this will somehow, magically go away and that we won’t talk about the year when my son was five and he had all those seizures. We’ll skip ahead from his Disney World fifth birthday party to whatever we do for him when he’s six, and forget everything in between. Short of a magic wand to make it go away, I wish I had a remote control to fast forward to that time.

That would be easy.

 

The (Super) Hero’s Journey

There is a common pattern in stories from two thousand years ago in Greek mythology and more recent stories like Star Wars and Superman. It’s often called “The Hero’s Journey” or the “monomyth”, popularized by Joseph Campbell in his book The Hero with a Thousand Faces.

In a monomyth, the hero begins in the ordinary world, and receives a call to enter an unknown world of strange powers and events. The hero who accepts the call to enter this strange world must face tasks and trials, either alone or with assistance. In the most intense versions of the narrative, the hero must survive a severe challenge, often with help. If the hero survives, he may achieve a great gift or “boon.” The hero must then decide whether to return to the ordinary world with this boon. If the hero does decide to return, he or she often faces challenges on the return journey. If the hero returns successfully, the boon or gift may be used to improve the world. ~Wikipedia

This is my hero.

epilepsy seizure keto ketogenic diet

He’s on his own journey. His ordinary world was back in Colorado, where he lived a relatively stress free, normal life. His call to adventure came from our opportunity to move to Philadelphia where he would have to enter a strange world to make new friends and face the other trials that normally come along with moving to a new city. His severe challenge now is the epilepsy that has altered his life so much in such a short time.

In the monomyth, the hero may get help on his journey, and my son’s journey is no different. We are grateful to have the help and prayers of our friends, our family, and of the doctors, nurses, therapists, and everyone else that is giving of themselves to help my hero face his challenge.

My hero is very much in the middle of his journey, but I know that my hero will return successfully from it, and I have no doubt that he will also find a way to improve the ordinary world, just like he improves mine.