Caregiving for Epilepsy During COVID-19

These are difficult times for everyone as we deal with the new normal brought by COVID-19. As with most things we take for granted, when they aren’t there we realize how much we relied on them! In-person interactions, physical contact, work and school, doctor’s appointments, running errands, and many other aspects of what used to be normal everyday life, are all different now. For children, teenagers, and adults with epilepsy, as well as their families, these changes can be especially hard, because for people with epilepsy, changes in their daily routines can mean a higher chance of seizures.

Luckily, people with epilepsy do not appear to be at higher risk for getting sick from COVID-19 just because of their epilepsy, and children are at lower risk in general. However, COVID-19 reminds us of how connected we are to each other, because even otherwise healthy children and adolescents can be carriers or have milder infections from COVID-19, and can then infect people they come into contact with who are more vulnerable to serious complications from COVID-19, like individuals with asthma, diabetes, heart disease, disabilities that cause lung problems, or older adults. So, it is important for all of us that everyone in the community, including children and families with epilepsy, wash their hands frequently, and follow social distancing. Social distancing means staying at home and away from situations where many people are close together, and if coming within 6 feet of people outside of your household, using cloth masks that cover nose and mouth for everyone older than 2 years.

If children with epilepsy do develop symptoms of COVID-19 infection, including fever, cough, sore throat, or diarrhea, parents should call their pediatrician to see if they should be tested for COVID-19, the flu, strep throat or other infections. Other measures parents can take for their child with epilepsy are: to make sure they are drinking plenty of fluids so they stay well hydrated, control fever with ibuprofen or acetaminophen (Advil and Tylenol), allow them plenty of rest, and of course, make sure they are taking their anticonvulsant medications as directed. Try to keep them isolated from family members and everyone else so that others do not get sick as well. If seizures do occur, which they might be more likely to, as can happen in kids with epilepsy who have an infection or cold with fever, be ready to give a rescue medication if the seizure is convulsive and lasts longer than 3-5 minutes. Such medications include rectal Diastat (diazepam), Nasilam (nasal midazolam), or oral wafers of clonazepam, that can be prescribed by your doctor. Make sure you have refills of anticonvulsant medication available from your doctor, and ask your doctor for 90-day supplies of each prescription medication when possible; in many cases, insurance companies and health plans are allowing this during the pandemic, if they did not before, so that patients have a reliable supply of medications at home.

Especially in these times of COVID-19, when everyone is stuck at home and trying to do schoolwork remotely, and parents are trying to work from home, or are worried about unemployment, it is important to try to maintain regular schedules for sleep and exercise, and to continue giving medication for epilepsy at the same times every day. Doing this can decrease the chance that children will have break-through or increased seizures. If your child or teenager is having more, longer, or more intense seizures than usual, let your doctor know by phone, email, or patient portal. They may want to adjust medications, check blood levels or other labs, or check an EEG, all of which may be possible to do without leaving home. Be sure to ask if these services are available at home and ask for the availability of phone visits or telemedicine (video and audio) visits with the doctor.

Many doctors’ offices are offering these services so that they can continue to provide the care you need, and to keep you safe by not having to come to the office and exposing yourself or your child to other people who could transmit COVID-19. If you are able to schedule a telemedicine visit with your doctor, make sure you are prepared for the visit by checking your phone or internet (laptop or tablet) connection ahead of time, following any instructions you have been sent by email or text, and downloading an app if instructed. Telemedicine visits should be treated by families and patients just like in-person visits with your doctor, so have your child’s current weight, their list of medications, pharmacy numbers, and questions ready, and make sure your child is awake and ready to participate in the visit with the doctor! Getting as much as you can out of what technology has to offer, and being prepared, may make the difference that keeps your child safe and out of the emergency room.

Everyone is dealing with new and unexpected worries during these times, and kids are no exception. Taking time to talk to your kids about stress, and how to manage it, is an important daily task for parents to remember, and can make a big difference in terms of managing seizures and keeping families healthy. Children and adolescents with epilepsy have 4-10 times the incidence of anxiety, depression, and other psychiatric problems, compared to children and adolescents without epilepsy. If you are worried your child or adolescent is suffering from these problems, bring it to your doctor’s attention. These issues are sometimes made worse by seizures or medications given to prevent seizures, but they also may happen just because your child is at higher risk for them, and they should be treated for what they are, and not ignored. The treatments for anxiety and depression are different than treatments for seizures and can make a huge difference in how well your child does and feels, their quality of life, and even how well their seizures can be controlled. Neither you or your doctor want to miss addressing important problems like these, or not provide the treatments your child needs to feel their very best and reach their full potential.

Finally, take care of yourself, too. These are stressful times for parents! Remember you are not alone in this struggle, and take the time to breathe, relax, sleep, and get the support you need from friends and family. There are many organizations that may have resources and tools available to you, like the Epilepsy Foundation, the American Epilepsy Society, your doctor’s office, your pharmacy, and your healthcare plan, among others. Reach out to them online, by email or phone, and ask for help if you need it. We are all in this together, and everyone wants the best outcome for children and families dealing with epilepsy. Stay safe, be calm, and let’s care for each other. If we can do that, we will get through this – as a community.

About the Author

Dr. Von Allmen has been the Director of the Pediatric Epilepsy Program and Medical Director of the Pediatric Epilepsy Monitoring Unit at the University of Texas Health Science Center at Houston for more than 12 years. Dr. Von Allmen earned her medical degree at Emory University School of Medicine and completed residencies at Emory and Northwestern University, as well as fellowships at the University of Chicago and Baylor College of Medicine. She has expertise evaluating children undergoing non-invasive and invasive procedures for epilepsy surgery, namely in the utilization and interpretation of Stereo-EEG and Magnetoencephalography. She has published peer-reviewed articles in Epilepsia and Nature, and also contributed to the writing of a book chapter on Vagus Nerve Stimulation (VNS) for Intractable Epilepsy. Dr. Von Allmen is an editorial ad-hoc reviewer for the Journal of Clinical Neurophysiology and sits on the board of the Epilepsy Foundation of Texas, Houston chapter.