Tag: vns

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.

A Year With The VNS

Last December marked the one-year anniversary of my son’s VNS surgery.

Leading up to the surgery, I was a wreck. The week before, I had to give a preview of a presentation to one of our executives. I was not present and I stumbled through, relying heavily on the notes that I threw together on a handful of index cards. A few weeks later, my boss commented that she noticed how off I was. “You’re normally so put together. I don’t know what happened.” I did, I thought. My son was about to have surgery.

As I wrote about when we were contemplating the VNS, there is something about a surgery that is so daunting. With medications or the ketogenic diet, we can stop them if they aren’t working and the side effects eventually go away. But you can’t “uncut” my child. Once the scalpel breaks the skin, that’s it. It’s done. Even if the VNS is turned off or if the leads are removed, there is no going back. That thought weighed heavily on my mind right up to when they wheeled him back to the operating room.

Thankfully, we are near one of the best children’s hospitals in the country, and the surgery went smoothly. The device was turned on a few weeks later, and the waiting game began.

For the first six months, I didn’t expect much of anything to happen, which was great because not much of anything happened. Except for the vibration in his voice from the tingle of the VNS and the two visible scars, there was no change.  We didn’t see any reduction in seizures, even as the doctors adjusted the intensity and frequency of the pulses.

At nine months, there was more of the same. His vocal cords seemed to adjust and his vibrato was less pronounced, but I could still hear it. Again, though, there was no seizure reduction.

A year after his VNS surgery, I would love to write that it took a year for the VNS to really start helping my son. I would love to write that he is seizure-free and that we were able to wean him off the ketogenic diet or remove a few pills from the handfuls of pills he takes every day. I would love to write that I sleep any better knowing that the VNS will protect my son from a catastrophic seizure and that I sleep much better at night.

But I can’t.

The obvious question is, knowing what I know now, would I have still gone through with the surgery?

The short answer is yes. The VNS helps a lot of people. At the time, we didn’t know whether it would work and I was and still am willing to try anything to reduce or prevent my son’s seizures. I’m disappointed that it didn’t do more for him, but it was worth trying.

Maybe someday it will help. Maybe it is already helping with seizures that we can’t see, or maybe it will someday prevent a really bad seizure.

What Is Left To Say?

When I started this blog almost 5 years ago, we were only just beginning our epilepsy journey.

The first few posts were written from his room on the neurology floor of the children’s hospital as I watched the doctors tried to stop his seizures. I wrote as a way to process my thoughts and feelings as I worried about losing my son and learned about words like status epilepticus and refractory.

After we left the hospital, I wrote about how our life changed. I shared stories of how we tried to rebuild my son after those initial waves of seizures took so much from him. I wrote about his therapies and how the exploration and experimentation with different medication led to the same frustrating results or unbearable side effects. I wrote about my fears about VNS surgery and my frustration with the hardship of the ketogenic diet.

For the past year, very little has changed. In spite of having a VNS implanted, adjusting his medication, and continuing the ketogenic diet, my son is still seizing almost every day. I still worry about the risk of SUDEP. I still worry about the long term effects of these seizures as I watch him slowly fall behind his peers at school.

When I would sit down to write, it started to feel like I was always wanting to write the same things and that I had already put my thoughts and feelings down. I wasn’t sure what was left to say, so I didn’t write anything.

Not writing had the additional benefit of not having to look beyond the surface of our lives. I could stop probing how I felt about the challenges my son faced and what it meant for his future. I could just live in the present and deal only with what was in front of me. But that began to feel like I was shirking my responsibility as a father and doing a disservice to myself and to my son.

During the time I stopped writing, I also received a number of messages from the epilepsy community. They reminded me that that others were going through the same challenges. I started this blog for myself but it brought me into a community of people who had already been where I was as well as people who were just starting on this path. The unexpected benefit of putting ourselves out there was that is reminded us that we weren’t alone. When things were dark and scary and uncertain, that gift provided immeasurable comfort.

I was worried that because nothing has changed that I wouldn’t have anything to write about, but that is part of this journey. The ups, downs, and the long stretches in between filled with uncertainty, frustration, accomplishments, and joy are all part of life. They are the things that remind us why we are here and bring us closer together. They are our outstretched hands reaching in to the darkness that are met by the hands of others grasping for connection.

As the new year began, I have started waking up early again. I make my coffee and sit on the couch in a quiet house staring at a blank page. I think about our life, past, present, and future. I think about the people we’ve met along the way, and I start filling the page with words.

It turns out, I might have more to say after all.