For children and adults living with epilepsy, taking daily anti-seizure medication is essential — but it can also be a struggle. Some kids may be too young to swallow pills or might resist taking medication, no matter what the form. Adults and children may experience side effects from epilepsy medications, have trouble fitting the timing of doses into their busy schedules, or simply forget to take their pills.
Members of MyEpilepsyTeam regularly post about how difficult it can be to give anti-seizure medicine to children or to remember to take their own medication every day.
Here, we provide six tips based on research, professional experience, and members’ advice on how to make it easier to take or give epilepsy meds exactly as prescribed.
Especially for young children, getting into a routine of taking epilepsy medication every day can help build confidence and autonomy over seizure control. One way to never miss a dose is to use clever strategies, such as setting alarms or using apps or pillboxes.
Members have discussed ways to remember to take their doses. One member shared, “For me, my mobile phone works best. Each day, an alarm sounds at 7 p.m., and that’s when I take my medication.”
Many members agreed that this strategy works well because they’re constantly near their mobile devices: “If your cell phone is stuck to you, like many of us, set your alarms for the time of your medication.”
Others prefer more discreet methods. “I advise having a container with all of your daily meds for every day of the week,” one member said.
Pillboxes come in different sizes, ranging from daily to monthly. “If you’re out of your home, bring a pocket pillbox,” advised another member.
Others prefer to refill their box less often and place it in a location where they won’t forget about it: “I got a pillbox to lay on my table. It has one week’s supply at a time!”
Different strategies work for different people. Whether you’re living with epilepsy or taking care of a child who has epilepsy, finding a trick that works best for you can help prevent missed doses.
It’s important for people living with epilepsy, no matter their age, to understand just how important their medication is. Recognizing the significance of how your pills help keep you healthy can confirm that they’re worth the hassle. “Me messing up once is all it took to not want to forget to take my pills ever again,” one member said.
In about 70 percent of people with epilepsy, medications can help fend off seizures. The U.S. Food and Drug Administration (FDA) has approved more than 20 anti-seizure medications. Your doctor may decide which of these treatment options to prescribe based on a variety of factors, including your age, other health conditions, other medications, and type of seizures.
If you have been seizure-free for many years on treatment, you may be able to speak with your doctor about stopping your medication. However, many people require lifelong treatment. Ask your doctor about the purpose of your specific treatment and your general treatment goals. Knowing these will better empower you to keep taking your pills.
If you’re a caregiver of a child with epilepsy, you know that sometimes children just don’t want to take their medication. Having conversations with your child early on about what the medicine does and why they’re taking it can begin to empower them to have authority over their own health. Members of support groups, like MyEpilepsyTeam, can offer tips to help you explain the importance of seizure medication to your child.
Anti-seizure medicines come in a variety of formulations, each with advantages or disadvantages for kids and even some adults. Some adults and children may tolerate chewable tablets better than pills you have to swallow, but these tablets may need to be taken more often — they don’t have a coating that allows them to be slowly released into the body throughout the day.
If you follow a ketogenic diet to help limit seizures, the amount of sugar in chewable or liquid medications may not be acceptable. Some compound pharmacies may be able to make sugar-free versions of your medicine in a form that’s easy to take. Be sure to discuss this option with your epilepsy specialist and pharmacist.
Not all medications come in a liquid form for infants and small children. In that case, some tablets can be crushed and dissolved in a bit of water. However, be aware that certain medications should not be dissolved into liquid because they may not work as well. Capsules that contain small pellets of anti-seizure drugs fall into this category. You may be able to open these and sprinkle the medicine into soft food for toddlers and older children, but always consult your doctor and pharmacist before doing this to be sure it’s safe.
Giving your child an easy-to-take form of medication will go a long way toward helping them stay on track, but sometimes they’ll still resist or refuse a dose. Caregivers should do their best to remain calm and remind themselves that this kind of resistance is normal. Finding a creative way to motivate your child to take medicine can sometimes yield the best results. Many kids respond well to simple daily rewards like stickers showing their progress in a chart, with a larger reward given at the end of a set time — maybe a week or a month — of consistent behavior.
Routines can be a useful tool for children. Connecting the task of taking medicine with another daily routine, like mealtime, might make it easier to establish this important habit. Children respond differently to different incentives, and you likely know your child better than anyone else does. Still, don’t be afraid to try out a new process or reward system. Your child may surprise you with how they respond to a creative form of encouragement to take their medications.
Missing medications is the most common trigger for breakthrough seizures, even when epilepsy is well controlled. This is why you someone should never stop taking a seizure medication without the approval of a neurologist. However, it’s common for people with epilepsy to forget to take a dose once in a while or be unsuccessful in giving one to a child.
It’s rare for just one missed dose to cause a breakthrough seizure, but this can happen. During a regular visit with a neurologist, discuss what to do if you or your child misses a dose of anti-seizure medicine. But if you’ve never had that important discussion and you realize that you or a loved on has missed one dose, don’t panic. Get in touch with a doctor or pharmacist for advice on if or how to make up a forgotten dose.
In the meantime, you can also do the following.
The rules about what to do after a missed dose depend on the drug and how often it’s taken. To determine next steps, check the drug company’s advice in the leaflet provided with the medication or on their website’s patient information page.
If you take pills once a day and it’s been only a few hours since your missed dose, take your pill as soon as possible and continue as usual the following day. If you take two doses a day and have at least six hours left until your next one, take your missed dose now. If you have less than six hours until your next dose, it’s probably better to wait and take it normally, on schedule.
Managing side effects can be a major barrier to sticking to an epilepsy treatment plan. One member of MyEpilepsyTeam asked, “How do you handle the side effects of your medication if it makes you drowsy?”
Common side effects of epilepsy treatment, according to Cleveland Clinic, include fatigue, mental fogginess, and unsteadiness — or, as one member put it, “not feeling like yourself.”
Members have described how they combat these symptoms, sharing strategies such as these:
No matter how you choose to boost your energy levels, lifestyle modifications may help with treatment-related fatigue.
If you feel that the side effects are troublesome enough to make you want to skip doses, speak with your doctor to see if a treatment change is possible. Before starting a new anti-seizure medication, ask your health care provider about which side effects, like rashes, call for immediate medical attention instead of at-home management. Epilepsy treatment is long term and sometimes lifelong, so it’s important to be on a treatment plan that works for you and improves your quality of life.
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 115,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.
What tips do you have for others who need help with taking their pills every day? Do you have suggestions for caregivers trying to encourage children with epilepsy to stick to their treatment plan? Share your experience in the comments below, or start a conversation by posting on your Activities page.