Epilepsy in the Leading Role: Living Life with Hope

Awareness is defined as the state of being conscious of something. More specifically, awareness is the ability to directly know, perceive, feel, or to be cognizant of events. When someone says to you, “my child has epilepsy” or “I have epilepsy,” what comes to mind? Does it strike you as serious? Do you know what it means, what it really means, to have epilepsy? Does it make you feel anything?

My name is Jennifer. I am an STXBP1 Foundation board member and mother to Emma Rose, who is an epilepsy warrior. I worked at a school for children with special needs when my daughter was born. I had witnessed many seizures. I knew that there were different types of seizures and that some children had much more sensitive triggers than others. I even knew about the ketogenic diet and VNS (vagus nerve stimulation) as therapies for severe epilepsy. Even understanding all of that, there was so much I didn’t know about life with epilepsy.

In the hopes of inspiring others to do the same, I want to invite you into our life with epilepsy. My daughter, Emma, is 12 years old and began having seizures half an hour after she was born. She was given the diagnosis of intractable epilepsy (drug resistant or not controlled by medications) when she was only 3 years old.

What is Our Life with Epilepsy?

Since her birth, we have had breaks here and there, but epilepsy has always held the leading role during her 12 years of life.

Our life with epilepsy is lots of medications. Emma takes three seizure medications along with CBD oil, that do not control the seizures, and rescue medication. She also has supplements to combat the side effects of those medications. Side effects currently consist of sleeplessness, carnitine deficiency, secondary (due to medication) folate deficiency, constipation, swallowing issues, excess saliva, and an increase in already-present tremors. Regular labs are required to make sure none of these side effects turn into more serious ones.

Our life with epilepsy is nighttime seizures. Emma sleeps with me because her seizures are mostly silent. I worry that I will miss one that requires rescue medication and the only way to ensure that doesn’t happen is to have her next to me. When the seizures are especially bad, she will whine when I put her down at night to let me know that she is scared to fall asleep on her own and wants me to stay with her until she does. She understands that this is when the seizures happen, and it terrifies her. This is another reason she sleeps with me. She calms down faster after a seizure if I am there to comfort her.

Our life with epilepsy is feeling helpless. Other than offering comfort, there isn’t anything else that can be done during a seizure. I am left watching the clock, hoping it doesn’t last long enough or they don’t happen in close enough clusters, requiring a dose of rescue medication. In Emma’s seizure action plan, a seizure lasting long enough to require rescue medication would also warrant calling the squad or visiting the ER to make sure she is okay. A dose of rescue medication goes everywhere with her, just in case, and everyone who has the potential responsibility of using it must be educated on when and how it is to be used.

Our life with epilepsy is a strict routine that limits our social life.

It’s imperative that Emma receive her medications at the same time each day. This requires either planning to take them with us or making sure we are home during these times. Sleep is also crucial. I make sure we are home for her to be in bed by a certain time, so she gets an adequate amount of sleep. Often this proves too stressful and difficult and staying home is just easier. There are no spur of the moment activities or trips for us.

Our life with epilepsy is knowing what her triggers are and avoiding them.

Extreme hot and cold are both triggers, so she is the first drop off in the afternoons to make sure she isn’t on the hot bus for too long. During the winter, she is bundled up to keep her warm and playing in the snow is not something she has ever found joy in. For the longest time, I warmed her towels in the dryer before getting her out of the bath because she shivered herself into a seizure once. Illnesses have always lowered her seizure threshold, so we avoid big crowds or germ-filled places during cold and flu season and the times we haven’t, she has paid dearly.

Our life with epilepsy is working hard to achieve new milestones, or as the STXBP1 community lovingly calls them, “inchstones,” and then having it ripped away after a particularly bad seizure or sedating medication. Think about the fatigue the brain must feel all the time fighting seizures and medication fog and then having to somehow summon the strength and clarity to learn a new task. 

Our life with epilepsy is realizing the moment the doctors no longer believe seizure freedom is achievable for my child. There is no urgency to schedule EEG’s, bring her in for an admission, or even check in on a regular basis.

They have accepted this is her fate, but I cannot. That sense of urgency hasn’t lessened for me since the first seizure I witnessed in that brand-new baby girl. Because on top of all of this, there is still something far worse epilepsy brings to our lives.

Our life with epilepsy is understanding that one of these seizures could take her from me and there wouldn’t be anything I could do to stop it. I try not to focus on this reality, but no matter how hard I try, no matter how much I distract myself, it always lingers at the back of my thoughts. It is a daily struggle to not allow it to overcome me and keep me from enjoying what I do have. One of the main risk factors for SUDEP (Sudden Unexpected Death in Epilepsy) is uncontrolled or frequent seizures, which is why there is still a sense of urgency for me to find seizure control for Emma. Other risk factors include seizures that begin at a young age, many years of living with epilepsy, and missed doses of medication. Some of these I have no control over, which is why I control what I can.

Hope in raising enough awareness that we build an army of family, friends, and community who help us fight for better treatments, improved quality of life, and a better future. Hope for increased research and doctors motivated in and passionate about thinking outside the box when treating those individuals with intractable epilepsy. And finally, hope for an eventual cure so that these epilepsy warriors can enjoy life, celebrate achieved milestones only once, sleep without fear, and dream of a future.