Epilepsy: Top tips and tricks from our staff

In honor of Epilepsy Awareness Month, some of the nurses and social workers who support the Boston Children’s Hospital Epilepsy Center share their top epilepsy tips.

Chris, a social worker in the Epilpsy Center

Chris’s tip: Get support!

Chris Ryan, LCSW, recommends that you consider therapy for your child or family — or both. Kids with epilepsy are at higher risk for behavioral and mental health conditions, like anxiety, depression and attention-deficit/hyperactivity disorder (ADHD). They may also struggle with the lifestyle restrictions epilepsy can cause. A therapist can help your child learn to cope with these conditions.

Chris says joining a support group can also help kids with epilepsy — and their families — learn how to adjust to living with epilepsy.

“Kids benefit from learning how to cope with epilepsy and knowing how to talk about it with friends,” says Chris. “Even kids as young as 7 pick up on differences, so their peers may ask questions like, ‘Why are you going to the nurse three times a day?’ And most kids don’t know how to answer.”

Chris says a support group can help everyone in the family learn how to handle these kinds of questions.

“I pitch support groups as a good way to learn to make healthy adjustments. A diagnosis of epilepsy is big news for a family, and this extra support can help everyone in the family process through it.”

Boston Children’s Epilepsy Center offers a number of support options for families navigating the challenging course of epilepsy treatment, from disease-specific support programs to our own Parent-to-Parent program.

The Epilepsy Parent-to-Parent program is staffed by family mentor support volunteers who are available to speak with families to share experiences related to epilepsy care, like preparing for surgery, managing specialized diets and new diagnosis support. To learn more or to volunteer as a mentor family, speak with your social worker.

You can also ask your social worker or nurse about how to find support groups in your area. Or check the Epilepsy Foundation or Family TIES of Massachusetts.

Colleen, a nurse in the Epilepsy Center

Colleen’s tip: Make taking epilpsy medication easy

Medications are required for most kids with epilepsy to keep seizures under control. But for a lot of kids — and their parents — this is a big change. “We spend a lot of time in the clinic teaching families how to make taking medications as easy as possible,” says Colleen Gagnon, BSN, RN. Here are some of her top tips:

  • Get a pillbox. A pillbox is an easy way to keep track of medications. For little kids, you can even decorate the pillbox with stickers or glitter to make it fun. Having a tangible object, like a pillbox, also helps make the process of taking medications part of their normal routine.
  • If kids don’t like the taste of a medication, ask your pharmacist about adding flavorings. Just be sure to check with your healthcare provider first (especially if your child is on a special diet).
  • For older kids and teenagers, start teaching them the responsibility of taking their medication as early as possible. Older kids should know which medications they take and at what time of day. Kids comfortable with technology can set their own reminders using a computer or phone app, to encourage them to take an active role in their treatment.
  • If you have any questions about your child’s medications or the side effects, call your clinician. Don’t stop giving a medication on your own.
  • Remember that some pharmacies may have to order your child’s medication and it may not always be available right away. Plan ahead and allow a week for refills and renewals.

Amar, a social worker in the Epilepsy Center

Amar’s Tip: Keep your child’s school in the loop

Most parents are good about getting in touch with school or daycare when there are changes with their child’s treatment. But it’s easy to forget these updates when there’s nothing new to report.

“I always suggest checking in with the school nurse at the beginning of each new school year. Make sure he or she has the most recent copy of your child’s seizure action plan and that you review any questions or concerns,” says Amar Khalsa, LCSW. “The school nurses work with lots of kids, so it’s good to refresh the nurse’s memory about your child’s needs at the start of the school year. In the long run, this yearly check-in will help familiarize the nurse with your child.”

Your school’s guidance counselor or adjustment counselor is also a great resource. “This person can help coordinate communication between you, your child’s clinicians and the school nurse,” says Amar. “You may also be able to schedule a weekly meeting with the school counselor as part of your child’s individualized education program (IEP) — this can be a really great way to help keep communication open.”

Jenn, a social worker in the Epilepsy Center

Jenn’s Tip: Reach out to your epilepsy team

Just like learning anything new, learning about epilepsy takes time and the journey can be stressful. Your care team can help.

“Epilepsy can feel like an overwhelming diagnosis at times and it can take time to process all of the information,” says Jenn Jeffs, LICSW. “There will be times when you get home after an appointment and realize you didn’t understand something or need to have some information repeated. That’s when it’s important to reach out. If you’re confused or uncomfortable about something, we want to know.”

Jenn says that some parents also find it helpful to keep a binder of information, including the names of all your child’s clinicians and notes from clinic visits. You can even keep separate sections for school, doctors, medications and community resources. If you have questions that don’t need answers right away, you can also keep a running list of them for your next visit.

Heather, a nurse in the Epilepsy Center

Heather’s Tip: Prevent colds and the flu

Getting sick is no fun for anyone, but for kids with epilepsy, getting the flu or a cold can be especially difficult.

“We know that illness and fevers can be triggers for seizures in some children,” explains Heather Grossklaus, MS, RN, CPNP, CPN. “If you notice any new seizure-like activity or are concerned that your child may be having a new type of seizure, it’s helpful to take videos to show your child’s neurologist.”

Now that it’s cold and flu season, help your child stay healthy with these tips:

  • Get a flu vaccine — it’s one of the best ways to prevent the flu and avoid spreading it to others. Make sure everyone in your family gets a flu vaccine every year.
  • Practice regular hand washing. It sounds simple, but washing your hands often throughout the day is one of the best ways to prevent the spread of germs. It’s especially important before eating and after using the bathroom. To avoid bringing germs into your home, make it a family routine to wash your hands whenever you enter your house.

Learn more about epilepsy at the Boston Children’s Epilepsy Center.