It Looks Like Rain

When my son was at his worst, with relentless seizures and medicine flooding his body, he wasn’t our boy. He was uncontrollable and so, so angry. He would have fits for hours where he would try to hurt us and say terrible things. We’d spend those hours holding him, telling him that we love him, and waiting for the storm to pass.

There were long stretches of weeks where we would only see glimmers of the boy that he was, like a break in the clouds. But, inevitably, the clouds would expand, find each other, and hide the light behind them.

After too many months, the enormous storm that ravaged our lives started to break up. The seizures were more under control and we were able to reduce his medications to only a handful. We sought counseling for dealing with his condition and with each other. With a lot of hard work, we had more breaks in the clouds, more times where we saw the light from our boy shining on our lives.

We spent a lot of time basking in that light. We were starved for it after so much time without it. There were still rumbles in the distance, a seizure or an outburst, that made the hair on our necks stand up. Occasionally, a storm would pop up, but it was usually brief and not as violent. Still, we remained on guard.

Lately, the sound of thunder is getting louder.The hairs on my neck are standing up again. We’re seeing the tell-tale signs of a storm. There are times when he can’t control his body or regulate his emotions. There are days when he’s not there and when he’s not processing and not aware. There are more times when he gets angry and pushes everyone away. We’re adjusting his medicine again and these signs act as our barometer that tells us when the dose is too high.

I know we have to adjust his medicine to keep the seizures in check, but I also know what that brings with it. I can see the clouds forming. It looks like rain.

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.

Keeping The Lid On

We had a few good weeks. After a year on the ketogenic diet and what seemed like the constant juggling of medicine, we were only seeing an occasional seizure in the early morning. The behavioral issues leveled out, even if the problems with attention and ataxia did not. But we felt stable enough that the conversation with our neurologist turned to talks of lowering one of my son’s medicines.

There was one medicine, in particular, that we started last year while we were living on the neurology floor of the hospital. It was one of the rounds on the bombardment of medicines that my son was given to battle the endless onslaught of seizures attacking his brain. After the smoke cleared, we left the hospital with a long list of prescriptions that included a few pills of questionable effect. Now that we were relatively stable, we decided to lower the dose of the first medicine to see if it was working and hopefully lessen any its side effects that were burdening my son.

The first reduction (with every medicine, there is a gradual weaning, not an abrupt stoppage) was uneventful. We did not see an increase in seizures, but we also did not see a reduction of side effects. After the second reduction, though, we started to see a change. Instead of confining themselves to the early morning hours, we started to see seizure activity during the day, as well. The myoclonic jerks that, in hindsight, acted as our canary in the epileptic mine slowly came back. At first, there were only a few…so few that we probably missed them initially. But then there were more, and they were hard to ignore. Then the tonic-clonic seizures also crept in to the daytime. Then the most telltale signs of a problem returned…the exhaustion, the uncontrollable sadness, slurring and having a hard time finding words, and the anger.

Our neurologist scheduled an EEG that confirmed that the subclinical seizures were also back and his EEG background was a mess. The report showed that the medicine that we suspected wasn’t helping had been working, so we again adjusted course and started raising the dosage.

Unfortunately, it was too late. By the time we realized that the medicine was working, the seizures were already cascading through my son’s brain, and it would take days before the increased dose would have an effect. We had taken the lid off the pot and it was boiling over.

As the seizures continued and the effects of each seizure lingered longer, we used our rescue medicine to buy us some time until the increase in dosage kicked in. We made it through the night, but the next morning the seizures and my son’s exhaustion and processing difficulties continued. “My brain is still going backwards,” my son said, which was his way of communicating that something was still wrong. We contacted our neurologist and by that night, we found ourselves admitted to the neurology floor.

The technicians hooked him up to an overnight EEG and within an hour our neurologist came in to tell us that his readout was still a mess. The plan was to monitor him to determine if we needed to introduce a temporary medicine to hold us over until we were back up to our working dose of his regular medicines, but the bridge medicine was one that, while it worked for seizures, brought with it rage.

We spent the night watching the EEG screen, pushing an alarm for each seizure we saw and calling out in to the night which type of his many seizures we were reporting. That night was a combination of a lack of sleep, concern for our son, and dreading the threat of the temporary medicine. By early morning, my son had gone a few hours without a seizure and I fell asleep next to him on his bed.

We woke up the next morning and my son started to feel better. The doctors came in and said, while his EEG still wasn’t great, it was trending in the right direction and that we could go home. While it seemed terrifying to leave while things were still “not great”, we learned last year that a positive trend is enough to go home with.

As we left the hospital, I knew, like I do every time, that this wouldn’t be our last time there. While this episode seemed like it was caused by a dosage change, there is always the concern that an illness will cause more seizures, or that a medicine stopped working, or that it’s a progression of my son’s condition.

We seem to be just trying to keep the lid on his seizures and the side effects of the medicine we use to try to control them, when all we really want is for someone to turn down the heat.