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

The “P” Word

Other than dying, I think puberty is probably about as rough as it gets.

Rick Springfield

I can relate. We’ve faced both of the top items on Mr. Springfield’s list during our epilepsy journey. There were many times when we didn’t think our son would reach puberty. There were long stretches when our son was in status, when we were in the hospital, not knowing if there would be a tomorrow. Once his condition stabilized, even though his seizures not being under control led to an increased risk of SUDEP, we worried that when puberty did come, his seizures would get worse because of the hormones and the changes in his body and brain.

Well, we have reached that part of our program where our child begins the transformation into a young adult. That thing we weren’t sure would happen that then loomed over us when we thought it might happen is here.

Puberty.

Part of me appreciates the miracle. The body is an incredible, complex system that changes as it matures and grows. We literally started as a clump of cells and were able to invent medicine, computers, and space travel. It’s also a miracle that our son is here at all. In a different time, in a different place, his journey could have gone in a very different direction.

Another part of me is right there with the man obsessed with Jessie’s girl.

Puberty is rough.

I don’t have any good memories of puberty. I do remember that I didn’t have any real guides or explanations for what was happening, so I largely experienced it alone. My parents and friends didn’t talk about it. In school, we learned the basics of biology from a book, but that didn’t cover the confusing, very personal, and very real changes that were happening to me. That experience left me feeling lost and insecure, and those insecurities carried well into my adult life, even today.

I want my son to have a very different experience than I did. I want him to have more answers than questions. I want him to feel supported rather than alone. But helping him navigate this part of his journey feels like asking for directions from a tourist. Oh, and also, there is a seizure monster that may or may not attack you along the way.

I’ve had enough therapy to know that the first step is setting the intention for it to be different for my son than it was for me. Check. We’re also very fortunate to be supported by his school and the team of people at our children’s hospital. There are many more well-informed, science- and data-backed resources available today. And I have an amazing partner, so our support system is in place. Check.

The next thing to do is start, although admittedly, I’ve felt like I’ve stumbled a bit taking those first steps. His access to both good and bad information and our evolving understanding of gender and sexuality have left me unsure of where we are starting. But with the right resources and support, we are starting to get our bearings, and we are on this journey together.

That’s already a better start than I had.


I wanted to pass along this book that has been helpful in grounding my understanding and the language we use when talking about gender, sexuality, and related topics. The book is For Goodness Sex: A Sex-Positive Guide to Raising Healthy, Empowered Teens by Al Vernacchio. Al also has a few TED talks and videos available that are wonderful resources for parents.

Modified Atkins Diet for Epilepsy

Last summer, I wrote about how my son was switching to the Modified Atkins diet after nearly seven years on the Ketogenic Diet. Since it has been a year on the new diet, I wanted to share an update on how it is going, as well as a few tips and foods we’ve depended on with the new diet.

The Ketogenic Diet is a special high-fat, low-carb diet that can help control seizures for some people with epilepsy. We started on the diet soon after my son began having seizures, and after it became clear that we would need more than medications to prevent his seizures.

Keto was initially a struggle, both in terms of finding foods and ways to introduce fat into my son’s diet and the effort and logistics involved with measuring every ingredient and preparing meals separately from the meals my wife and I ate. We would bring his food with us to restaurants and, when we traveled, extended trips required a place to stay that had a kitchen. But we made it work because the diet, along with medication and a VNS, helped manage my son’s seizures. We have never been seizure-free, but we found the right balance between medication and quality of life, even if my son mostly ate the same handful of meals.

The Atkins diet is a low-carb diet from the 1970s. Similar to the idea behind keto, the idea is to limit the number of carbs. The Modified Atkins diet blends the low-carb approach with adding more fat. For my son, it opened up a new world of food, especially since the popularity of Atkins and other low-carb diets have introduced a number of products on the market that are easily available on the shelves of most grocery stores.

My son now gets a set number of net carbs a day and a minimum amount of fat that he should have, although we’re always trying to add more fat into each meal. He can have as much protein as he wants, which he demonstrates by piling up the hamburgers and hot dogs onto his plate (he’s less excited when chicken and fish are on the menu). Net carbs are calculated as total carbs minus fiber, so fiberous vegetables in a salad are a mainstay, as well, and my son hasn’t seen this amount or variety of vegetables since before keto.

When we transitioned from keto to Modified Atkins, we monitored my son closely to see if there were any changes to his seizures as well as any changes to his cognition…there are some reports of keto helping improve cognition. In both cases, we haven’t seen any meaningful changes so far. His seizure frequency and duration are the same, and we haven’t noticed any worsening in his cognition.

The most significant change that we’ve seen is his quality of life. My son was so excited to have a sandwich for lunch, just like the other kids in school, rather than the fat-heavy ice cream we usually sent him with. He can also have a small bowl of low-carb cereal for breakfast, just like his friends. And now we eat the same meals at dinner, just in different proportions.

I was wrestling over the past few years with the Ketogenic Diet as I saw my son notice how his food differed from his friends. I started questioning the value of the diet and pushing to get him off it while the doctors were convinced that it was helping him. The Modified Atkins diet feels like a step in the right direction. Even though it is still a medical diet, there are enough options that it doesn’t feel as much like a restrictive diet as keto did.

Overall, the change has been a positive experience for my son and our family. While it may not be an option for everyone, it is worth having a conversation with your doctor if you’re looking for alternatives to the ketogenic diet to help manage seizures.

If you’re on or thinking about the Modified Atkins diet, first check with your doctor. But I wanted to pass along a few items that are staples for us that have made the diet more manageable and delicious.

Catalina Crunch Cereal – There are a few low-car cereals (5g net carbs per 1/2 cup) on the market, but we’ve found Catalina Crunch to be easily available and tasty. You can find them in the cereal aisle at Whole Foods, or try a sample pack of flavors through Amazon or direct from the manufacturer.

Schmidt Oldtype 6/47 Bread – At 6g net carbs per slice, this is the bread that allows my son to have a sandwich at lunch. The taste and structure are close to that of other breads and it holds up well. The bread comes in a few varieties, as well. There are other 6/47 options like buns and bagels, but those have more net carbs. The bread is available at our local Acme grocery store.

Outer Aisle Sandwich Thins – Found in the frozen section of Whole Foods, we toast these in the oven and use these as hamburger buns. Two slices is only 2g of net carbs.

Outer Aisle Pizza Crust – Also from Outer Aisle and available in the frozen section at Whole foods is their pizza crust. When we were on keto, we made crust out of soy flour, mayonaise and egg. These are bigger (and already made) and only have 3g net carbs per crust.

Mission Carb Balance Tortilla – These are available in most grocery stores and offer a low-carb option for burritos, quesadillas, and wraps. At only 4g net carbs per tortilla, my son can have two good-sized quesadillas for dinner with cheese and meat or beans snuck inside. Pro-tip: If you slather on some mayo and then add the cheese, it’s a good way to add more fat to the meal, too.

Atkins Bars – Atkins bars are great to have for a snack. There a meal replacements, snacks, and treats, each with differing amounts of net carbs. But we usually add one of these to my son’s lunch box for school (Snickerdoodle is his favorite). In most stores, Atkins products are near the pharmacy and health section, not in the granola or Kind bar aisle.

Impastable Noodles – These are the best low carb pasta we’ve found so far. They come in different types, allowing us to mix up different recipes including traditional spaghetti or mac and cheese. I usually cook it a little longer than recommended to get a better texture, but we all eat these now on Spaghetti Sunday.