Category: keto

Keeping The Door Open

If you believed the headlines, you might have thought that CBD was a miracle cure for epilepsy. After so many drugs failed to control my son’s seizures or burdened him with terrible side effects, I felt like we needed that miracle. But, in the end, CBD, like many other medicines, did not help to control his seizures.

This post isn’t about CBD. It isn’t about Keppra. It isn’t about dilantin, or topamax, or vimpat, or triliptol, or tegratol. It isn’t about any of them in particular but, in a way, it is about all of them. It’s about feeling like a door closes a bit more every time we stop another medication. There is still light on the other side because I can see it splashing through the opening onto the floor. But the beam is getting narrower. And no matter how I angle my head, I can’t actually see the source of the light. I have to trust that it is there.

I’m frustrated that another thing that has worked for others didn’t work for us. I hoped it would live up to the hype and that we would be one of the success stories. I want desperately for something to work for my son. As hopeful as I am that he will wake up one day seizure-free, I’m not greedy. I’d settle for a magic pill that would allow us to stop his other medication and free him from their side effects. A pill that would let him stop the ketogenic diet so that he could have a slice of pizza or a piece of candy.

The side effects. The ataxia. The attention. The unbalance. The learning difficulties. The feeling of being different. The loss of control of his mind and body. The lack of freedom. An uncertain future. I want that magic pill to take away these things, too.

But there is no magic pill. As every parent of a child with epilepsy knows, some things work for some people but not for others. We happen to be in the unlucky camp of people for whom most things don’t work at all.

The door hasn’t closed, though. I won’t let it. I jammed my foot between the door and the frame so that it can’t close. I’ve got one hand gripped on to the handle and the other with a firm grasp on the door, and I’m pulling as hard as I can.

I won’t let that door close.

There is too much at stake. When there is light, there is hope, and there is so much to be hopeful for.

I won’t let that door close.

If I have to, I’ll rip it right off its hinges.

My Little Miracle

When my son was first diagnosed with epilepsy, I didn’t think we needed a miracle. At first, we simply hoped that the seizure he had would be his only one, but it wasn’t. Then we hoped that the medicine they put him on would prevent more seizures, but it didn’t. Still, I believed in the science and the medicine and I thought the doctors would figure out what was causing his seizures and they would consult the great book of diagnoses and prescribe a way to make the seizures stop. But they couldn’t.

The first time I sat next to my son’s bed in the hospital while he was in status epilepticus, I started to lose hope. Or maybe I needed more than hope. I watched the EEG on the screen above his bed spike and flash a constant red alert. The seizure count continued to climb. I thought about racing against the power meter on the side of my grandmother’s house. My cousin and I used to race to see if we could make it around the house before the reading on the meter ticked up to the next number. I was fast in those days, but as I looked up at the counter on the screen, it was moving too fast even for me.

The doctors did the best they could to slow the frequency of the lightning strikes in my son’s brain. A barrage of medicine did more harm than good, leaving him toxic and unable to move. There were a lot of sleepless nights, sitting up on the purple, uncomfortable foam bed as I watched a team of doctors circle around my son’s bed. The wires, many times reattached, that went from my son’s small head to the Great Machine carried signals of coordinated chaos that mirrored the activity by the doctors scrambling to find an answer.

As our time in the hospital continued to accumulate, so did the seizure count on the screen. The technicians reset the system a few times. They said to make sure they were getting good readings, but I wondered if it was to hide how high the seizure count was going. As bad as it is to see the number increasing, it’s probably worse to see the equivalent of an odometer rolling back to zero from too much mileage.

By the second month in the hospital, I started to lose hope. The science and the medicine weren’t finding the answer and my son was still seizing and my sweet boy turned into an unrecognizable, angry creature trapped inside an unstable shell. The child we brought into the hospital was not the one we were taking home. With my hope faltering and no end to my son’s agony in sight, I turned to finding a miracle.

Out of difficulties grow miracles. ~Jean de la Bruyere

I always thought of a miracle as one big thing. I thought a miracle meant that we would wake up one day and my son would be healed. When we sat in the class about the ketogenic diet and heard of miracle stories of children that were seizure free on the diet and were able to wean off their medication, I wanted that miracle. When we were finally able to try CBD, after seeing the stories in the news of the miracles that it had done with children that had hundreds of seizures a day, I wanted that miracle for my son, too. But none of these miracles visited us in the way that I hoped. Or maybe, not in the way that I expected.

epilepsy dad miracle

Sometimes a miracle is not one big thing but, instead, a lot of little things. While the pills or the diet or the CBD alone did not provide relief for my son, a combination of them slowed and occasionally stopped the rampant storm inside his brain. Dedicated and persistent teams of doctors didn’t give up finding a working dose of medicine and the therapists worked impossibly hard to restore his mind and body. My son is alive, in school and learning, dancing, laughing, and playing. He’s back with us in ways that I began to think were impossible. I was so focused on the lack of one small, discrete defining miracle that I almost missed the larger one that was slowly revealing itself.

It’s easy to give up on miracles when we don’t wake up to find a healed child, a rich bank account, or a clear purpose for our own life. We think we don’t deserve a miracle because of something we did in our past that cannot be forgiven. Or we pray harder or channel our anger at God and the universe when we continue to see someone we love struggle or suffer and they do not intervene. But the secret isn’t praying harder for the miracle that we think we want. The secret is being open to the miracles that happen around us every day.

Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see. ~C.S. Lewis

 

Things No Child Should Get Used To

A few weeks ago, we went to the children’s hospital for an appointment. We walked through the large, automatic doors and up to reception where my son said hello to Mary (they’re on a first-name basis), who commented that she liked his red hair. Without needing to ask, she pulled our family up from memory on the computer and printed our visitor badges.

Check-in completed, my son led us up the main staircase to the second floor. At the top of the stairs, he turned left and headed down the long hallway towards neurology. He knows his way around the hospital and which building to go to for neurology, or speech, or another test. As I followed him down the hall, it made me sad to realize how well my son knows his way around that place. A child should know his way around a toy store, not a hospital.

As we turned the corner, we passed phlebotomy. There were nervous parents and children in the waiting room, and seeing them sitting there made me think of the times we were in those chairs. The first few times, we were nervous, too, but after too many visits, we got used to it. Now, my son likes to talk to the phlebotomist as she prepares the needles. He politely says “No, thanks” after she invites him to look away, and he watches as the needle pierces his skin. “I never cry”, he says, which is almost true in the hundreds of times he has been pricked and pierced. “You should come here more often to show our other patients how to do it,” we’ve heard more than once. “Ok, ” my son replied, “I’m really good at it.” As I remembered him saying that, I felt sad. That’s not something a child should be good at.

He knows the routine of the physical exam, not because he has had years of exams under his belt, but because he has had so many in the short time he’s had epilepsy. These doctor visits, the trips to one of his therapists, the emergency room visits, they’re part of his routine, those things he’s done so many times now that he just does them because, well, that’s what he does. All these things are now just part of our lives, are part of his life, like eating, and breathing, and going to the park. He wakes up and takes a handful of pills, and another handful at night, without question, because that is what he has to do. He doesn’t get to eat the food that his friends do, and he can’t just have a snack, it has to be weighed and measured because that’s how it is and he’s used to it. He doesn’t look at a restaurant menu because he knows he can’t order from it, and he’s used to that, too.

He’s getting used to having seizures. He’s crying less after he has one in the middle of the night and more regularly just putting himself back to sleep. If he forgets to put on a pull-up and needs to change, I’ll often catch him on the floor halfway through the process by the time I get to his room. He’s getting more aware of his seizures, too. He had one on the basketball court the other day. When I asked him if he was okay and if he knew what happened, he replied, “I had a seizure, but I’m ok.” It rolled off his tongue so casually it was as if he was describing a shot that he missed or if he had tripped on a rock and fell.

On one hand, I’m grateful that he has accepted these restrictions and these changes in his life so easily. I am not sure that I have the strength to constantly explain to him why he has to do these things when I am still struggling with my own questions. Why is this happening to him? Was it something that came from me? Is this our lives forever?

On the other hand, if I think about the things that he has gotten used to, it breaks my heart. This condition has taken away too many things from the one person who I desperately wanted to open the world for, and I’m having a hard time resolving that discrepancy.

I try to think about the positives in this situation, but most of the time I just see a little boy who has gotten used to too many things that he shouldn’t have had to.