One Rare Mom gets the unvarnished truth on the challenges families face when living with this complicated condition.

By Laura Will, MSN & Rare Mom to a child with epilepsy

“You’ll adjust.” Those were the words of comfort the physician on our care team offered to my husband and I  in response to our fearful question about what would be like when our child developed seizures that cannot be controlled by medicine. But is it true that we adjust? I guess so? In part? Perhaps.

When you speak to other parents and clinicians who are caring for children with seizures that continue despite all efforts, it becomes clear that families do experience a “new normal” in which these seizures become routine. However, these  distressing moments, that in many cases can be coupled with infuriating setbacks, are not soothed with experience. Refractory epilepsy is hard to understand fully if you have not lived it first hand as a patient or caregiver. 

If you know, you know. You know about hyper-vigilance, disrupted sleep, glances from strangers, impact on family members, home care help concerns, and the fortitude that managing all of that takes. So what are the commonly experienced pain points experienced by caregivers? 

Inconsistent sleep, or lack of sleep altogether

When you have a child who is at risk for seizures, that risk is often highest during the transitions between wake and sleep states. At first, I decided I would just sleep next to my son. But after three years, co-sleeping became unsustainable for us. Nighttime is riddled with fear or alarms, and sometimes both. Parents utilize specialized seizure-sensing cameras (such as a SAMi), mattress pads, and pulse oximeters to monitor their child during night time activity. One mom notes, "We have the alarms and the SAMi camera, set for any seizure longer than a minute. Sometimes it’s really something that needs attention, sometimes not. Sometimes I can fall back asleep. Sometimes I cannot.” Sleep is critical to our brains’ executive functioning and working memory. It has an impact, she adds, detailing how poor her memory is these days— she writes down everything she has to keep track of at home and at work.

Finding and retaining good help 

For non-nursing help, families find people who might be a good match through resources like care.com (which has a “Special Needs” section that you can access through a tab on their website) or apex-social.com, where you can look for specialized live-in help.  But that care is not without significant financial cost. Many children qualify for home nursing hours which are covered by state funding, but even then, a nurse might flake out. One parent notes that it’s a lot of work to train someone on all the nuances of seizure monitoring, and on what type of seizure might need rescue medication, and even after all of that work and preparation, “ they sometimes just quit and you are left wondering why.”

The emotional impact on other family members, especially siblings

Parents are often able to sense the stress that seizures impose on siblings. Our palliative care physician suggested giving our well sibling a task to help their seizing sibling, such as retrieving  a favorite stuffed animal for the seizing child to cuddle with when the seizure is over. Young kids often are worried that they are somehow the cause of the seizure activity, or might also become sick, so lots of reinforcing that they are safe and that the event  is not their fault can be useful. A child life specialist can be  a wonderful resource too. They can provide a regular check-in point for the children, and are able to work through the turbulence of medical events with age-appropriate play and creativity.

The reality is complicated

So, do we ever really adjust to refractory epilepsy? Among rare disease caregivers, I hear a lot of “yes,  and…” comments: 

Yes, we have adjusted…and it’s still hard. 

Yes, his brother knows what to do when he has a seizure now…and it has an impact on his anxiety. 

Yes, I’ve gotten used to disrupted sleep…and I rely completely on my calendar and reminders because my memory cannot keep up with the collective sleep deprivation. 

Yes, there is a habituation, a new normal…and there continue to be scary and painful moments. “You get used to your kid having seizures, but it still hurts to watch your child go through it. Some seizures are harder than others to witness,” says one parent I spoke to. ” One mom jokes that she now has become accustomed to waking up her husband to put pants on in the middle of the night, because she might have to call 911…again. This is their life right now, and it is undeniably more complicated than a life without refractory seizures.