meds Archives - Page 6 of 12

Leading With Love

Sometimes I look at my son and I see a tall blade of grass, swaying in the breeze. His legs appears rooted on the ground, but his body moves and bends as if it is being pushed by an invisible force. Or a corn stalk that is too thin to support the ear that is is carrying, bobbing in no particular direction but down. It seems an exhausting tasks to constantly keep from falling over.

When he moves, I see a puppet whose strings sometimes get twisted. The extension of his limbs or the gate of his stride are not quite right, and he sometimes tumbles to the ground. We do our best to pull him up and untangle his knotted strings, but each time he falls, my heart aches.

I wonder if, when he does fall, when he’s lying on the ground, if that’s when he feels the most stable. Like in my younger days after I had too much to drink. When I wanted to lay on the bed and prayed for the world to stop spinning around me. My prayers were rarely answered, but at least I felt like there was nowhere further to fall. I could close my eyes and feel the world spread out below me and holding me so that my body could release all its tension. Only, he shouldn’t be old enough to know what that feels like.

When he falls to the ground, I get angy and frustrated and sad. I look at him as that blade of grass, or stalk of corn, or sailor, or puppet. I can’t help myself but wonder if he wants to stay down for an extra second to let his body not worry about balance. But when I do, when he looks at me, I worry that he will see those expressions on my face directed at him. That he’ll think that I am angry and frustrated at him, or that he’ll see me sad and think that it is because of him. It’s a heavy burden to think that you are the cause of such powerful emotions in another person. Of course, he’s not. My anger, my frustration, and my sadness are not because of him, but because of what is happening to him. But what else could he think when I look at him the way I do? He shouldn’t be old enough to know what that feels like, either.

The cruelest thing that epilepsy continues to do is to try to make my son feel less than he is. Less than an amazing boy. Less than the best son. Less than a gift. Less than a miracle. It feels as if it is using me to do its dirty work, to project those feelings on my son through my worry and frustration. I catch myself doing it, but usually after the message has been delivered. It’s a terrible feeling to worry about what your child thinks you think when you look at him. Because regardless of what is visible on the surface, hidden underneath is always love.

I wish my instict was to lead with love. I want so much for that to be what he sees when I’m looking at him instead of the temporary emotions caused by a symptom of his condition. I don’t want him to have to remember that I also love him, I want that to be where he goes first. Because the pain and sadness at what his condition is doing to him is amplified by that love. Because loving him is where I am, first and always.

Throwing It Back

We walked along the shore of Atlantic City. The beach was quiet with only a few other souls in view. The sun warmed the winter air to a comfortable temperature and cast stark shadows of the shells on the sand. The seagulls circled silently around us riding the current in the air. The waves rhythmically pushed themselves ashore. They darkened the sand to an almost black and erased the footprints that my son had left moments before.

That morning along the beach, my son took to launching enormous clam shells back into the sea. The inhabitants had been the unwilling dinner guests of another sea creature or one of those circling seagulls. Now, their empty shells laid scattered along the shore. I watched as my son scurried along the sand, finding the biggest ones, and brought them up to the water’s edge. The ocean had given up the shells to the land and now my son was sending them back.

Since my son was young, he has always liked to throw things in the water. He liked to see how far he can throw something against the limitless backdrop of the ocean. There were no walls to bounce off, no cars to avoid, only infinity against which to test his strength. After he hurled an object into the sky, he would track it through the air until it reached its destination. Would it skip or would it splash? Either was acceptable, as long as it was far. On the really good ones, he’d turn to me and ask if I saw how far it went. Of course I was watching, I told him, but he was already looking for his next projectile.

As I watched him throw shell after shell, I thought about the things I’d like to throw into the sea. I’d start by taking his seizures from him. Like a piece of paper, I’d crumble them up into a ball until they held their shape. I’d grip it like a fastball and wind up with enough torque that, when I let go, the seizures would disappear over the horizon. I’d do the same with his medicine and their side effects. His learning and attention issues would be the next to go, followed by his fatigue and ataxia. Over and over, I’d crush these afflictions into dense spheres and throw them with all my strength. Whether they skipped or splashed, I only want them far away from my son, somewhere at the bottom of the sea.

To CBD Or Not To CBD

There is no shortage in the news of sensational headlines highlighting the miracles of CBD and medical marijuana as a treatment for epilepsy.

The articles write about children who tried any number of medications that failed to control their hundreds of seizures a day but were all but cured by CBD.

After two years of uncontrolled seizures, we were so desperate for something that could help our son so we brought CBD up with our doctors. At the time, it was illegal in Pennsylvania and our doctors weren’t comfortable talking about it because they had no experience with it. We were unable to get into the CBD trial happening at our hospital so we discussed moving back to Colorado. Our doctors said there was only limited testing on the drug and that it was focused on specific syndromes associated with epilepsy. There was little research on its long-term effects or its interactions with the antiepileptic medications. Another concern we shared with the doctors was the inconsistent quality coming out of many CBD providers. At the time, we made the decision to not try CBD because it wasn’t worth the risk of introducing a drug with so many unknowns. We had seen what a bad reaction to a medicine looks like for our son and we weren’t willing to risk the progress that we had made.

My son was still having seizures every day so we started to make plans for a VNS surgery. I struggled for weeks with the decision and, even after it was made, I agonized over the thought of surgery for my son. Then, in April of 2016, medical marijuana was legalized in Pennsylvania. We again brought up CBD as something to try before we pursued the surgery and we were referred to doctors in Colorado. The waiting list to get an appointment was so long. Even after a trip to Colorado, we were not able to get an appointment. We spoke to one of the doctors from our neurology department that was familiar with CBD and decided to give it a try.

When the bottle of oil arrived, I tried to temper my expectations. We’ve tried and been disappointed by too many medications already and, regardless of the press clippings, I knew that, for every sensational success story, there were countless stories with less than miraculous results. It may not work at all, or my son may have a negative reaction, as he has had from many other treatments.

The dosing to introduce CBD is slow and we were told it could take months before we saw the full effects. As the parent of a child with epilepsy, I’m no stranger to hearing about patience. That practice doesn’t make it any easier, especially watching my son continue to have seizures. But we started the treatment with a hopeful, open mind and as much patience as we could muster.

After a few weeks, we were up to a functional dose but we didn’t notice any difference in my son’s seizure burden. We increased the dosage again and continued to wait. By the third month, we did see a slight decrease in seizures but nothing like the stories in the news and nothing we could directly attribute to the CBD. With the advice of our doctors, we decided to stay at the dose we were on and adjusted one of my son’s other medications. The result was our first few small stretches of seizure-free days.

I was grateful for those days but I was also disappointed. I had hoped that the CBD would be the miracle drug we were looking for. I hoped it would stop his seizures and that we could get off the other medicine and the ketogenic diet. So far, we haven’t been able to reduce any other medications. Ultimately, we’re not quite sure how much CBD is actually helping my son or if it is helping him at all. This is how it goes sometimes with any drug that tries to control something as complex as the brain. You try it, see if anything changes or gets worse, and then decide what to try next.

For us, I think our experiment with CBD will be coming to an end. We’re going to adjust his regimen and, once those changes take hold, we will start weaning off CBD. If anything indicates that it was working, we will reevaluate. I expect, though, that it will be another medicine to add to the list of ones that didn’t work for us.