Sebastian is six and a half years old. When we were living in Cairo he was first diagnosed with epilepsy, almost 5 years ago, while we were visiting family in Australia.  Being told that your baby - diagnosed with cerebral palsy - also has a seizure disorder is completely overwhelming. (When Sebastian was just two he had an ambulatory EEG. He had to have a box with a bunch of wires which were attached to his head, sit on top of his head. Although they put gauze and tape on it, it kept falling off. This is our attempt at keeping it in place)

Dear Sebastian,

Today - the last day of the decade - you were diagnosed with epilepsy. Who has time to think back on an entire decade when we sometimes struggle to take one day at a time? A storm blows in; big, grey clouds eat up the blue sky. Patches of white shine as the sun struggles to hold on to her last day of the year. We’re waiting for the rain. But I feel like it’s already pouring. 

Your great-grandma died three days ago. Her heart finally gave out as she struggled for breath. Here we are, half a world away, where time was only allowed to stop for a moment. Here comes the thunder rolling in and breaking the silence. I wonder if it will wake you. As you laid sleeping in my arms, exhausted, I prayed for a long, restful sleep. You need it; seems your seizures are caused by lack of sleep. Systematic tonic epilepsy. Just like your CP. Its own special name (Dystonic Cerebral Palsy). 

While our family in Michigan floats through their days as they bury grandma, we struggle to learn about the new medication you must take. The rain begins to drop, cool on my arms.

We left Australia with bags full of medicine. Medicine I didn’t trust wouldn’t hurt my son. Medicine with pages of side effects and no doctor to monitor them.

Although Sebastian’s EEG showed seizure activity, there were no seizures. Yet.  The medicine was a preventative measure but when I called the International Hospital in Cairo in search of a doctor, they referred me to a doctor in London. An ocean away. We decided to monitor Sebastian closely without giving him the medicine. We also decided that we needed to move. Sebastian turned 2 in May 2010.

We moved to Michigan for the summer before moving on to our new home in Toronto at the end of the summer. We immediately set up appointments for another neurologist and another EEG.  This time we did a video EEG for an entire weekend. After 48 hours of monitoring, much of that time also attached to a video monitor, there were no seizures recorded. What they found instead was seizure activity or irritability, focal discharges and focal activity. Focal meaning in one place and in Sebastian’s case, the left frontal lobe. The neurologist explained that there were sparks but no fire. He said there was no sign of infantile spasms and no signs of seizures from a clinical standpoint.  What does that mean? In my mind it meant no seizures. In the doctor’s mind it meant that there was a ticking time bomb. And he was right. The day after the EEG Sebastian started twitching in his right leg. When I phoned the neurologist he immediately wanted to put him on Trileptal, an anti-convulsant medicine. I was nervous about putting him on the medicine. 

Sebastian had his first full seizure before I was able to give him his first dose. It was terrifying.

Dear Sebastian,

I feel helpless sometimes when you cry and I don’t know what’s wrong or what to do to take away your pain or fix the problem. But this morning, I felt a new kind of helplessness. One mixed with fear. And you probably don’t remember. You probably don’t even know what happened. As you were sleeping in my lap your right arm and leg started to shake. Soon your whole body was shaking and convulsing. Your eyes rolled back. I said your name to try to wake you. I held you tight in my arms, crying. I didn’t know what to do. I thought, this is it. This is a seizure. It was worse than I ever could have imagined. I carried you downstairs and your eyes opened, looking at me but not seeing me. I said your name over and over through the tears. You looked up at me and tried to smile but your body was seizing so you were in and out of consciousness. You smiled an empty smile and then your mouth twitched and your face contorted as drool slid out from the corner of your mouth. I took you to your papa and we just talked to you, trying to get you back to us. I imagined you seeing me, a blubbering mess. There was nothing else I could do. But wait. And wonder. How long would it last?

Seizures became part of our lives. We tried to take note of what triggered them. It was still a lack of sleep or maybe a change in routine. There was adjusting to a new time zone, a new environment, a new schedule, new therapies.  We saw changes in Sebastian from the medication. It become harder for him to do the things he was learning how to do and to have the energy to do it. I researched medicines I didn’t want Sebastian to take in the first place. Medicine that can make his hair fall out. Make him feel dizzy or sad. Make his tummy hurt. Make his liver weak. Make it hard for him to do the things he was already learning to do. Medicine that is so strong it’s also used for bi-polar disorder.

Despite the medication he was still having seizures.

The medication was constantly being adjusted to try to stop the seizures which just made Sebastian more tired. After a big seizure which took us to the hospital we added another medication. And then the seizures stopped.  We moved to Toronto and things were good for a few months. Until the seizures started again. And then we had to navigate a new system. Again. And a new medication. There was weaning and adding. There were sleepless nights in the ER. There were more MRI’s and sleep deprived EEG’s. Because everyone wants their own baseline. Sebastian slept in our bed most nights. Or we slept in his.

Then we got a video monitor and hoped we’d see a seizure or hear a seizure that way because we were all exhausted. When your child is having a seizure there is nothing you can do except wait it out. I hold him tight, sometimes upright or lay him on his side if he is already laying down. Sometimes he burps and soon snaps out of it. Sometimes he even smiles and I know he’s back after I’ve been saying his name over and over because there was nothing else I could do. Usually his seizures are only about a minute. Which is a good thing. Five minutes is bad. Anything over that and it’s a trip to the hospital.

Dear Sebastian,

You are brave and you are strong. Despite feeling too tired sometimes you always have a desire to engage with the world around you. You laugh at your daddy’s jokes and your sister’s joyful and often silly antics. You tell me how much you love me with that smile in return for my words. You work hard to communicate with us using your voice and your communication book/iPad. You love to feel the sun on your face and the wind in your hair on an afternoon walk, no matter hot, cold, sun, rain or snow.  Your seizures are now just a part of the way things are and we keep on having adventures in spite of them. They come less often, that we know of, though sometimes I wonder if you have them in your sleep and I just don’t see them. Which is scary. But I suppose that’s parenthood. They happen when we do too much too often too fast so we try to take things slow and I think we do a pretty good job at enjoying life together.

Since Sebastian is now on two medications, Keppra and Volproic Acid, his seizures are more under control. I say more because he still has them. I thought that he would get on medicine and they would suddenly disappear. Antibiotics make your sickness go away, right? Well, not so with seizures. It’s a gamble and usually a cocktail of medicines that do the trick. Unfortunately for us, the trick only helps most of the time, not all of the time.  The medications cause him to space out sometimes and can make him tired, though less so since he’s been on them so long. We don’t know what the long term effects of the medications are but because they are keeping his seizures ‘under control’, no one wants to rock the boat. Well, the doctors don’t. I know that it’s possible the medication creates a fog in which he goes through life. Not because he can tell me but because I have talked to others.

So I look into other other options, like CBD oil, but change is scary. So we keep it as it is for now while I do a bit more research. My hope is that we can keep Sebastian’s seizures under control in the healthiest way possible. When your child has seizures there is a lot of fear. I’m afraid of the seizure that happens in the night that I don’t know about. I’m afraid of that seizure that doesn’t stop at five minutes. And I’m even afraid of the medicine fogging his mind, keeping him from reaching his fullest potential.

You can follow Sebastion’s story at Free as Trees.

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