Tag: medication

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 Night Watch

Every night before he goes to bed, my son takes a handful of pills.

The pills are the last line of defense that my son has against the unrelenting seizures that constantly lurk on the horizon. Especially at night, when his brain slows down to recuperate from the day, my son’s brain isn’t strong enough to defend itself against attack.

His medication is meant to strengthen his defenses so that his brain can rest. They are the guards on the parapet defending the residents inside the walls throughout the night. But the gaps in my son’s wall are too wide for the guards to cover. It’s not a question of whether a seizure will break through; it’s how many. It’s how much damage will the attackers do before the sun rises.

We’ve tried to boost his defenses. New medications. The ketogenic diet. VNS surgery. But none of them have prevented the nightly raids from exacting their toll on his developing brain. Even combined, they are no match for the electrical storm the flows wildly across the neurons and floods the cells.

It could be worse. It has been worse. Before we knew what this was, the flood nearly took my son. The uncontrolled pulses flowed through the gaps in his natural defenses and eventually breached them entirely, leaving his body frozen and his mind disconnected. We managed to beat back the invader and rebuild. We strengthened the walls. We bolstered the night watch. But our seizure calendar records the history of attacks, painting cells with yellow markers revealing every defeat in long ribbons of sequentially colored squares.

Every night before he goes to bed, my son takes a handful of pills because there is nothing else to do. We stick to our routine because it is better than the alternative. His pills, his diet, and his VNS play their part. But as he drifts off to sleep, I turn on the monitor and take my post watching over him, too. Because it’s my job on the night watch to be there when his defenses ultimately fail, to comfort him after the attack, and to help him rebuild the next day before we do it all over again.

 

Actually, My Son Is Not “Fine”. But He Is Amazing.

I spoke with an administrator at my son’s school, talking about how the year was going so far, asking about how the replacement for his one-on-one was going, and just generally checking in. The administrator said that my son seemed to be doing “fine”.

“Actually, ” I said, “he’s not fine. He has epilepsy. Some mornings, he has seizures. Then we give him his anti-epileptic medicine and try to help him keep his attention focused long enough to get dressed for school. Luckily on most days now, he can stomach breakfast. The diet that he is on is really hard on him, but hey, it helps with his seizures. Then he walks or, on good days, rides his scooter a few blocks to school. We’re grateful that the short trip doesn’t tire him out as much as it used to when school first started. Then we drop him off in to a class that has 29 kids and hope that his one-on-one (when he had one) cares enough that day to help him focus on his class work and hopefully pay attention long enough to pick up what is being taught that day. He can’t follow more than one direction at a time, and it takes an enormous amount of energy to stay focused for that long. By mid-morning, his brain is already exhausted and his body starts to follow, but he makes it to lunch, where he usually just watches his classmates eat. Recess, though, is his favorite part of the day, where he can play with his classmates with whatever energy he has left, although I think he usually wills himself to fake having energy so that he can just be with other kids. Then he packs up, heads home, has a small snack before his body and mind give up and he has to take a nap, just so he can wake up and make it the rest of the day. That’s not what I call fine.”

The administrator was caught off guard by my rebuttal. “I just meant that academically he seems to be where he should be.”

“He’s doing well academically because after he wakes up from his nap, our nanny reads and works with him to help reinforce what we’re hoping he’s learning in class and missing from the afternoon sessions. By the time I get home from work, he’s usually exhausted mentally again, but we get to play while dinner is in the oven. Well, unless it’s our night to go to behavior therapy. After dinner, we pop him full of pills again, head to bed, and then repeat the process for the foreseeable future.”

I don’t blame the administrator. He only catches glimpses of my son throughout the day. With other disabilities, there might be some external indication that a child is different, but with epilepsy and its related complications, you may not catch the signs unless you have a reference, or spend enough time with a child, or happen to catch a seizure. But while I don’t blame him, I also wanted to dissuade him from thinking that my son was just another kid and, just because he wasn’t seizing at school, that he was “fine”.

“Fine”. “Fine” doesn’t reflect the struggle he has to keep control of his body. “Fine” doesn’t show the foggy side effects of his anti-seizure medicine that clouds his brain, or the complicated, restricted diet that sometimes turns his stomach. “Fine” doesn’t capture how hard he has to work to stay focused or follow direction or put things in sequential order. “Fine” doesn’t get the help he needs at school so that he can try to keep up with the kids that aren’t filled with brain-altering drugs or seizing every day. “Fine” doesn’t convey how difficult it is for my son to make it through the day.

And yet, he does.

No, my son is not “fine.” But he is amazing.