11 Tips for Raising a Child With Epilepsy
Real talk: From the moment you discover your child has epilepsy, it can feel like you’re in an alternate universe. It’s normal to experience bleak emotions and to have just as many questions. Deep breath. Learning about your kiddo’s needs and arming yourself with real-life advice from doctors and fellow parents can help you feel infinitely more in control. We’ve got some advice that can help.
Find Your Tribe
The days following her son Reagan’s first seizure on the soccer field at age 4 were a whirlwind for Dallas mom Stephanie Fokas. She and her husband needed a crash course in epilepsy, while making treatment decisions for Reagan and caring for their two other kids. Fokas learned about her local chapter of the Epilepsy Foundation (EF) and its programs for families. “Just speaking with other parents can make you feel connected to a community struggling with similar circumstances,” says Fokas, now president of the board of directors for Texas’s EF chapter. Google EF groups near you or chat with parents on EF’s community forum.
Be Choosy About Your Doc
A great doctor is everything, so ask questions and shop around! You and your kiddo deserve a doctor who will partner with your family effectively and compassionately. “Working with a neurologist who understands you, communicates well and has experience with your child’s intricacies is key,” says Shannon Morris, of Mahwah, NJ, mom to daughter Adrian, 15. “Once we understood Adrian’s unique form of epilepsy [Adrian, 15, has CHD2 myoclonic encephalopathy], we sought out a doctor who had experience in cases like ours and developed a more effective seizure-management plan.”
Get to Know Seizure Triggers
You may recognize triggers for your kid’s seizures: tiredness and lack of sleep, stress, and not taking medication. Kids with reflex epilepsy have seizures in response to specific stimuli like flashing lights or noises. You may find that your child can sense when a seizure is coming: He or she may have what’s called an “aura,” which might be tingling or a feeling that a seizure is about to happen. (Seizures are classified into two groups: focal—also called partial seizures—located in one part of the brain, and generalized, which affect both sides of the brain; auras are more common with complex focal seizures.)
Start a Seizure Log
Keeping a seizure diary may help you track and anticipate when seizures are likely to happen, which can in turn help you do anything that’s in your control to help prevent one. “Knowing the triggers for seizure—in our daughter’s case, a lack of sleep, sunlight with photosensitivity, illness—have helped us to work in a preventative way,” says Morris. “We stick to a sleep schedule, bring a visor and sunglasses on car rides, pay attention to warnings in movie theaters, and keep on watch during any illness.”
Get Strict About Sleep
Kids with epilepsy who don’t get enough sleep are at greater risk for seizures. “One of the most common sleep issues I see is primary insomnia: trouble falling asleep,” says Aaron Cardon, M.D., a pediatric epileptologist with Child Neurology Consultants of Austin in Austin, TX. Power down screens one to two hours before bed and be stringent about bedtime. A surprising tip: Don’t allow playing, doing homework, or even reading in bed. “Keeping the bed strictly for sleep can break a lot of primary insomnia problems,” says Dr. Cardon. If your kid has trouble staying asleep—another common issue—talk to your doc about a low-dose of melatonin.
Have a Seizure Response Plan
This plan (also called a seizure action plan) is vital for school administrators, teachers, and staff. “Rylie has always had a seizure action plan with her picture on it at school,” says Lori Foley, of Bridgewater, NJ. At the start of every school year, Foley also writes Rylie’s teachers to brief them on her medical background. When Rylie, 16, an accomplished swimmer, competes, meet officials receive the plan, too. If Foley sees that Rylie, who has been seizure- free for two years, is having an “off” day, she texts the coach a heads up. That open communication is crucial, she says.
Support the Sibs
Good news: Siblings of kids with epilepsy are more likely to feel protective than resentful of their sib’s condition, according research from the Seizures and Outcomes in Children Study (SOS-KIDS). However, very young children may have a period of adjustment after a sib’s epilepsy diagnosis. “When Reagan was diagnosed, it was hard for his 4-year-old twin brother to understand why Reagan was spending so much time at doctor's appointments and in the hospital. He felt abandoned and even jealous,” says Fokas. What helped: enrolling in play therapy. “We found it useful in processing his feelings,” says Fokas.
The specifics you discuss with your child will evolve depending on their age, but honesty should be at the core of every conversation. That said, you don’t have to get into medical speak, nor do you have to have all the answers to their questions; you can always say you will find out and respond later. “I always wanted my daughter to know this stinks, but other people have their things they have to deal with, and this is just one part of you,” says Lori Foley. “I show her, ‘This is not stopping you.’”
Become Friendly With Your Pharmacist
Your pharmacist can be a go-to in helping manage your child’s epilepsy, answering your questions about medications and side effects, and even making liquid medications more palatable by adding your child’s fave flavor. “If Whitney gets sick and needs an antibiotic, I need to make sure there's no interactions with the epilepsy medication she's taking,” says Michelle Belvedere, of Latham, NY, whose daughter, now 10, was diagnosed at age 5. “We have a great pharmacist, and I always feel comfortable asking questions.”
Do Your Thing(s)
Epilepsy doesn’t mean kids have to live in a bubble. “We don't want them to be overprotected, and we want to preserve their self-esteem,” says Lewis Milrod, M.D., a pediatric neurologist in Edison, NJ. You may need to be wary of heights on the playground, but you can make exceptions if you’re there to catch your kid on the monkey bars, notes Dr. Milrod. When your child is taking a shower, ask that the door stay unlocked. Go ice skating, just wear helmets. Sleepovers are likely reasonable, but if you’re uncomfortable, host at your house. Bottom line: Keep life as normal as possible.
Hang In There
No doubt: An epilepsy diagnosis can knock you and your family off its feet. “I think I cried sporadically for the first two years after my daughter’s first seizures, I was so overwhelmed. The side effects from her medication alone, like nausea, made day-to-day life so challenging,” says Michelle Belvedere. “With time I learned more about epilepsy, and fortunately Whitney’s side effects abated. I just met another parent with a young child and was able to honestly say to her, ‘There is light at the end of the tunnel.’”