Are we giving sleep enough attention?

Written By Anne Thompson Heller, mom to 3yr old Jordan who lives with DEEs.

How many of our kids experience sleep challenges? From what I gather – many of them! For us, epilepsy and sleep have gone hand in hand from the beginning. In fact, Jordan’s excessive sleepiness at two months old was one of our first indications that something was wrong. It wasn’t long after her seizures reared their ugly head that sleep really went off the rails. Any recognition of day versus night seemed to disappear and for more than a year, her newborn-like sleep schedule became increasingly difficult for us to sustain. In addition, her wakeful nights, seizure activity, and sedating medications caused her to sleep the days away, which took an emotional toll.

For the longest time, the topic of sleep and sleep habits was an emotionally sensitive one for me. In addition to being personally exhausted, Jordan’s excessive daytime sleepiness was a smack in the face reminder of the seizure activity that was threatening her life and getting in the way of her development. While I saw other parents playing with their babies, engaging them, exposing them to new things, and watching them grow and develop – I was wishing mine would wake up. 

We brought up the topic of sleep at almost every medical appointment. It was believed that in time, she would adjust to her medications and hopefully by focusing on treating her seizures, she would experience better wake time during the day and sleep better at night. So for months we “waded the waters” hoping for improvement. While waiting, I did what so many of us do, I did my own research. 

Turns out, the relationship between sleep and epilepsy is well documented. It’s a reciprocal, multifaceted, and complex relationship. It is not at all uncommon for individuals with epilepsy to have sleep disorders, which can include sleep apneas, restless leg syndrome, insomnia, and parasomnias (when someone may seem to be alert but without awareness because the brain is only partially awake). For many, seizures occur during sleep and during sleep transitions. Sleep and sleep quality can also directly impact seizure control, as well as the frequency and severity of seizures, and in turn, those seizures further impact sleep quality. Not to mention, poor sleep quality is an associated risk for SUDEP (sudden unexpected death in epilepsy) (Moore, Carvalho, St Louis, & Brazil, 2021; Carotenuto, Parisi, Esposito, Cortese, & Elia, 2014).

The more I learned, the more important addressing Jordan’s sleep became. We advocated and pressed for more help and were referred to a sleep psychologist at our local children’s hospital. The sleep psychologist shared how sleep was a learned skill and explored a number of behavioral interventions we could use. Things like establishing a bedtime routine and limiting stimuli such as lights, music, sounds, etc. were all discussed. Since we were already doing all of the behavior strategies suggested, the sleep psychologist referred us for a sleep study. Jordan’s sleep study revealed she had central sleep apnea, a form of apnea in which her brain would delay, or restrict signals for her to breathe. She’d stop breathing and that would wake her up. I felt validated and terrified by those results and so grateful her response was to wake up! There are interventions worth trying, to address central apnea, such as the use of oxygen overnight, but for many, time and further development are needed. Thankfully Jordan did outgrow her central apnea a few months later, but that didn’t stop us from co-sleeping with her crib right next to the head of our bed for two and a half years. With Jordan’s seizures and central apnea and a realistic fear of SUDEP – I wanted her head right next to mine. I wanted to hear everything and be able to respond at a moment’s notice. 

Jordan is almost three and a half now. She’s been sleeping in her own room for about a year, has a consistent bedtime routine, and sleeps fairly well. But it took a lot and a long time to get to this place. Like refractory epilepsy, sleep problems have treatments that can be explored. Like refractory epilepsy, some treatments and interventions help and others just don’t. But also, like refractory epilepsy, knowledge can be a powerful tool to help reduce risks and promote safety. 

I read a research study in which the authors concluded that everyone with epilepsy would benefit from sleep evaluations as a standard of care due to the prevalence of co-occurring sleep disorders and epilepsy (Carotenuto, Parisi, Esposito, Cortese, & Elia, 2014). Yes! Why isn’t it a standard practice? Especially, when we know a better understanding of sleep and sleep quality can not only promote treatment of sleep related issues, but can directly impact seizure frequency and severity and address a risk factor for SUDEP?. 

Addressing sleep can impact the quality of life for those with epilepsy and their caregivers and we hope you can join us for our webinar all about SLEEP & DEES on August 22nd and 1pm EST to learn more. Register here!