November is Epilepsy Awareness Month

In honor of Epilepsy Awareness Month, I think it is only right to give you all an inside look into how epilepsy has affected our family. I feel that over the years I’ve been pretty transparent about what we go through, but until somebody really sees it for themselves, they don’t get it.

A quick summary of my son’s diagnosis and what I’ve written about in the past: Almost four years ago (January 2017) David was diagnosed with a rare disease called FIRES (Febrile Infection-Related Epilepsy Syndrome). Shortly after having his first seizure, he was put in a medically-induced coma for going into status epilepticus (basically a state constant seizing). Many different anticonvulsants were used to try to treat the seizures at onset, but after a week of the seizures not responding to medications, a medically induced coma was the only answer. He was in the hospital for several months, and underwent a drug trial during his stay for SAGE-547 (which we later found out was not approved for status epilepticus based on the trial results). We’ll never know if David got the placebo or the real thing, as it was a double-blind study. He ended up finally responding to medication after the trial though, and was released from the hospital in April 2017.

After months, David is finally walking out of the hospital doors!

Fast forward to life after diagnosis>>> David has been put on so many different medications for seizures that we’ve lost count. Every time we wean off of a medication David goes through legitimate drug withdrawals. You may ask, “why wean medication if he gains seizure control?” Well, to be completely transparent, several of the anticonvulsants he’s been on have resulted in unwanted side effects like cognitive delays (which have led to intellectual disability), and/or wanting to hurt himself and/or others (which has resulted in hospitalization until the medication was out of his system). Quality of life has been our main goal since realizing what certain medications can do to David’s mental health.

Back in the hospital again.

Right now, David is in a good place. Close to two years ago he had VNS surgery. A VNS implant is sort of like a pacemaker to the brain. It sends a maintenance shock to his brain every minute via his vagus nerve. This has resulted in less intense seizures when they do occur, and reduced postictal time. It has also allowed us to wean more medication, as the shock every minute lessens the amount of seizures he has. We are so thankful for this technology and that it has worked so well for him.

David is awake after his VNS surgery!

While he is in a good place, David is still experiencing a weird seizure trend. He seems to be seizure-free for 4 weeks, then on the 5th week has a week of seizures. Although most of these seizures aren’t severe during the week, we always have the possibility of SUDEP (sudden unexplained death in epilepsy) lurking in the back of our minds. Most of the time when David has a seizure, he stops breathing. His lips turn blue due to oxygen deprivation, and we’re always worried about what the aftermath of that oxygen deprivation will be. If he has gone too long without oxygen during a seizure, we find ourselves trying to breathe air into his mouth. While this isn’t standard procedure, it doesn’t hurt him, and honestly, we do it because we are helpless to do anything else. It is a desperate attempt on our part to do what we can and make sure he lives through the seizure. Usually after the seizure is over, David gasps for air as his lungs take over breathing for him.

Usually during a week of seizures is when our family needs the most support. We are going through traumatic event after traumatic event. We don’t sleep well due to constant worry for David. It is difficult for us to even cook, let alone go to the bathroom or shower, because we always have to be on the lookout for a seizure. We do have a soft helmet that David uses during these “on” weeks to protect his head if/when a seizure does occur. Constantly being “on guard” is difficult on the whole person mentally, physically, and spiritually.

David in his helmet.

But again, nobody understands the full extent of how seizures affect the family until they see one for themselves. Below is just one of the many videos I have on my phone. This is how we are able to best record David’s seizures. We record the time, which direction he fixates, whether or not he is blinking, lip-smacking, stops breathing, how/what body parts he moves, etc. Because we have so much information we have to remember, having the seizures on video is our best option when reporting to David’s neurologist. This also helps us to keep the dates and notice seizure trends.

*Please know before watching that this video is graphic. You can hear the absolute panic in my voice. I also want you to know that I have David’s permission to post this video. If at any point in his life he wants me to take it down, I will gladly take it down. This video is to help others understand what we go through on a pretty regular basis, and how serious (and scary) seizures can be. Thankfully this seizure is one of the less severe ones, considering.*

I want you to imagine for a moment, constantly worrying that this is going to happen to your child. Wondering if/when the next one will occur. Wondering if your child will live through the next one. Now, imagine going through this every day for a week. What about 3 or more times per day for that week? Do you feel overwhelming anxiety and helplessness? Maybe even exhausted thinking about how you can take care of yourself, your family, and your child while going through so many seizures? How can you go to work? When are you going to have time to take a shower? What if one occurs while you are in the shower and you aren’t there to help him? What if he has one in the middle of the night and you are asleep and can’t help him? This is what it is like for us.

After a seizure like this, David usually sleeps for about an hour. This time of recovery is called the postictal stage. Before David’s VNS surgery, he would’ve been postictal for 3-5 hours after a seizure like this. Now it is about an hour and a half tops. Others with epilepsy can sometimes be postictal for a whole day. It really depends on the person and the severity of the seizure.

When someone you love has seizures, you quickly learn that whether or not they are generally controlled with medication, a breakthrough seizure can occur at any point in time. As parents/caretakers, you are always on guard just in case. Being in this constant “survival mode” mentality is extremely difficult and tiring.

My hope is that this post helped you to understand the difficulties those with seizures and their loved ones face on a regular basis. Awareness and understanding can save lives and help those on the outside to better support families who live in this constant stage of alert.

8 comments on “November is Epilepsy Awareness Month

  1. Jacqueline Chara

    Sweet sister Desirae,
    May our merciful Lord and Savior be with David and your family in all moments. May His strength and peace overflow in you and ve a testimony of His love and grace. Thank you for sharing. I am hopeful one day we will have great stories to share about my Lilybug.

    Blessings

    Jackie Chara

    Like

  2. I hope you find the perfect treatment.
    Seizuremamandrose.org

    Like

  3. Jennifer Cowan

    My heart goes out to.you and your family. I have wanted to write about my son and our life after F.I.R.E.S. It is hard to put into words and you did it perfectly for me. It is almost exact to our story. Thank you for being so raw and real.

    Like

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