the night watch epilepsy dad seizures medication keto

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.

 

8 thoughts on “The Night Watch”

  1. Epilepsy Dad,
    Take care of you so you can continue to take care of him. You and K are warriors just remember to refuel. I love you all.

  2. A brilliant picture you describe to show what “fighting epilepsy” really means. Relentless and tiring and something for which you have made a battle plan given the best intelligence and and resources you have—at that time. People ask how we are and, if up to it, we say “still fighting” instead of just “ok” or “the usual.” To know we are not alone in understanding the fight is something. You are a tremendous, loving Dad and General for your troops. Keep going. It may seem little, but he is better for what you do.

  3. Dear Dave. You are living my past. I hope with all my heart that you find a way to get your son to the other side of this. Rose is wonderful right now. She is beautiful and brave. She turned 27 yesterday. The nightmares are fading memories. Bless your family. You have my prayers and tears.

  4. It’s been one year since I posted your blog on my page. Thank you for being. Thank you for writing so clearly what it is for us as parents.

  5. Dave you capture the extreme feelings that we go through having a child struggling with epilepsy. Do you use any epilepsy watch to track your sons seizures at night?

    I wanted to share something that I did in tracking my sons seizures and particularly at night. Thought might be useful.

    I bought my son a Xiaomi Miband 4 and installed the default Mifit app on my phone from android playstore. There is another app
    Notify and fitness by onezerofit. This app is an addon app and provides excellent insight into the sleep. It is useful since it can track heart rate while sleeping and whenever my son gets a seizure at night then his heart rate increases by default and this gets captured nicely.

    Every morning I just check his heart rate while sleeping in the app and find it almost accurate. Any spikes then its a seizure attack. All it costed was around 40 usd equivalent. Btw I am no way connected to any of these companies and just sharing.

    1. Thanks for reading and reaching out! We’ve been unlucky so far with any of the seizure detection devices. Even though we can see and hear them on camera, the nature of my son’s seizures, apparently, are difficult to capture. I’ll take a look at the ones you suggested! ~Dave

Leave a Reply

Your email address will not be published.