Category: meds

Scars and Survival

Last summer, I was at the pool with my son.

It wasn’t that long ago that he needed to stand on his tiptoes to keep his head above the water. Now, standing over six feet tall (the tallest in our family, as he likes to tell everyone), only his waist is submerged. His skinny torso sticks up like a twig in a pond.

His body carries many markers from his life. There are scars from his adventures and falls. There are stretch marks on his lower back from his growth spurt. And there are remnants from the incisions on his chest and neck from his surgeries that implanted the two devices and the leads to his brain.

It’s hard not to notice, prominently pushing against the skin on his chest, the two implants. Against that skinny frame, with no fat or muscle to buffer them, the devices look huge. They are a permanent alteration to the contours of his body, captured on his chest like a relief map, describing the differences in elevation and the way the land rises and falls. And similar to the permanence of mountains in our lifetime, they will remain a defining part of his body’s landscape.

Of all the recorded history on his body, the implants are the hardest for me to see. The scars, even those from his surgeries, can be rationalized away as everyday occurrences of a growing child. I’ve had a scar above my eye since I was five, when I chased my sister under a glass table and forgot to duck. I’ve had a scar under my chin from when I was ten and tried to jump over a softball on my bike. And I have scars on my hands and arms from the countless times that I clumsily pulled something from the oven without protection and burned myself.

But the implants can’t be explained away as normal consequences of living. They are more than just damaged or healing skin and tissue. They are unnatural, and there is no alternative explanation to the reality that they are devices inserted into his young body to help reduce his seizures. They are visible reminders of his challenges—challenges, like the devices themselves, that he will likely carry for the rest of his life.

Seeing them, it’s easy to fixate on the implications and miss out on the significance of the moments that they enable. He’s alive. He’s having fewer seizures and has stopped a few medications. He and I were in a pool playing basketball, spending time together, and laughing. The reason he has the devices may be overwhelming, but the life they allow him to live is a medical miracle.

I still see the devices when I look at him, but I’m learning to see them differently. They don’t just mark his struggle—they also mark his survival. They are symbols of how far medicine has come, of how far he has come, and of the moments we still get to share.

Yet

“Yet” is such a powerful word.

“Yet” allows us to acknowledge current struggles while leaving space for future possibilities. It’s a bridge between what is and what could be, subtly shifting focus from a fixed state to one of potential.

There have been so many times when we thought we were out of options when it came to treatments for our son’s epilepsy. We tried all the medications. We tried the ketogenic diet. Because his seizures were generalized, he wasn’t a candidate for surgeries that are available to people who have focal seizures.

Each time one of the treatments failed to control his seizures, we felt resigned to give up hope.

But even in the 10 years since my son was diagnosed, there have been many new advancements.

Genetic testing is being used to identify specific genetic mutations associated with epilepsy, which has enabled personalized treatment strategies, improving efficacy and reducing side effects.

Epidiolex was introduced in 2018 to treat Lennox-Gastaut syndrome and Dravet syndrome.

A new surgical technique called Laser Interstitial Thermal Therapy (LITT) that uses a laser to target and ablate seizure-causing brain tissue precisely was approved, reducing recovery time compared to traditional surgery.

Although it was used off-label earlier, Vagus Nerve Stimulation (VNS), which involves implanting a device that stimulates the vagus nerve to reduce seizure frequency, was FDA-approved in 2017 to treat children as young as 4 years old with drug-resistant focal epilepsy.

Deep Brain Stimulation (DBS), traditionally used to treat movement disorders like Parkinson’s, is now being used to target brain regions like the anterior nucleus of the thalamus to reduce seizure frequency in individuals with drug-resistant epilepsy.

We’ve benefited from these advancements. In addition to genetic testing, my son had VNS surgery when he was nine and DBS surgery right before his 15th birthday, even though they weren’t options when our journey started.

Of course, it’s easier to be on this side of it and say that I always had hope or that I automatically added the word “yet” to the sentence “there is nothing left to try.” I didn’t. I was overwhelmed because everything we tried didn’t stop the seizures. I had almost lost my son, and I was afraid that, with every failed treatment, every door was closing on his future.

Eventually, I would be reluctant to try a door because that would mean fewer were available. At least with untested doors, there was hope. It’s like in high school, when there was a girl I liked, if I didn’t ask her out, she couldn’t say “no,” so there was always hope for a “yes.”

What changed for me was seeing the advancements and having them offered. First, there was a new medication, then another, and then the VNS. I saw first-hand how continued progress created more doors, making trying one a little less scary. I began to believe there would be more doors, which made it easier to believe in the word “yet.”

Right now, our hand is on the DBS door. We’ve cracked it open and are waiting to see what is on the other side. There are never guarantees, but we hope it improves our son’s quality of life. If it doesn’t and we have to close that door, too, when the feeling comes back that there is nothing left to try, I will remember to complete the sentence:

It feels like there is nothing left to try…yet.

Farewell, Onfi

Dear Clobazam,

Well, it’s been a long road, Clobazam. May I call you Onfi? We’ve known each other long enough now that I feel like we can use our informal names. You can call me Dave.

As I was saying, it’s been a long road. We’ve known each other for more than eight years. Our doctor introduced us when our son was in bad shape. She said although you were relatively new, you had been known to help other children like our son, and, let’s face it, we weren’t in a position to turn away anything that could potentially save him.

I don’t need to tell you, but the list of side effects with benzodiazepines is intimidating, especially for children. There was also the matter of cost since our insurance didn’t fully cover you. But we were trying to save our son, so we’d pay anything, and we were fortunate to find the National Organization for Rare Disorders that helped us.

While we were trying to figure out the financials and come to terms with the side effects, we started to see a reduction in seizures. As messy as everything was, that was the light that we followed. As you know, we had tried so many other medications, and they either didn’t help or made things worse or came along with catastrophic side effects like your cousin Klonopin or the nefarious Keppra.

When we started to see behavior issues after increasing your dose, we feared the worst. What Keppra had done nearly broke us, and it was happening again with you. The thought that the only way to control the seizures was to let the emotional regulation get out of control was a choice I didn’t know that I could make. Fortunately, backing off on how much of you my son used brought him back to us—too much of a good thing, as they say.

We made a few adjustments over the years regarding how much of you and when my son needed you. Eventually, you were only required at night and became part of our nighttime routine, like tea and bedtime stories. Even though you couldn’t make all his seizures go away, you gave him a chance at a much better, less seizure-filled sleep which also resulted in a better quality of life.

When our doctor brought up the idea of letting you go, I was nervous and skeptical. It’s not that I forgot the dangers of long-term use, but you were one thing I knew had worked. She said we would take our time to make sure the separation didn’t cause more stress or seizures. It would be a long goodbye.

About halfway through, we noticed a few changes in our son. The seizures mostly stayed the same, but he was always exhausted and sometimes irritable. We paused the wean for a few weeks until, fortunately, we saw our son stabilize. Even though it turned a ten-week wean into a few months, the extra precaution was warranted, given our track record.

Once we continued to reduce the dosage, we didn’t stop until it was done. When I filled his medicine containers, I did it for the first time in a long time without adding any of you to the nighttime compartment.

And here we are. We’re a few weeks past our separation. Our son is doing well. We increased the dosage of a different medicine to help compensate for not being under your…protection? Influence? I don’t know what the right word is.

We may not need you now, but you will always have been a part of our journey and one reason why our son has made it to where he is today. For that, I am grateful.

Farewell,

Dave