By Lisa Marinelli Smith
Raising and guiding a teen is challenging for any parent, especially balancing when to step in with advice and when to hold back. But for parents whose teens have epilepsy, giving them more independence is even more complicated and nerve-racking.
When kids are little, parents manage their medications, interact with teachers on their behalf, plan activities they know are safe and make sure someone is prepared to help their child at school, practice, club meetings or playdates if a seizure occurs.
As kids with epilepsy enter their teen years, parents have to navigate how to help them act as their own advocates and make sensible plans that don’t put them at a safety risk. For any teen, that can be uncomfortable and unnatural.
So here are some suggestions to help teens with epilepsy reach their goal of being more independent:
Stress being honest and open
Teens are self-conscious and don’t want to stand out as different among their peers because of a medical condition. They may want to hide the fact that they have epilepsy from friends, boyfriends or girlfriends because they fear rejection.
Encourage your child to be honest and open with friends they trust. Being caught off guard watching a seizure is more alarming for a friend than finding out about the condition. Knowing a teen has discussed what may happen during a seizure with a friend and seizure first aid will go a long way toward parents feeling more comfortable about giving their kids more freedom.
Coaches, club leaders, work supervisors and other adults a teen regularly spends time with should be aware of the condition and know what to do if a seizure occurs.
Teens also need to show a track record of being honest with parents about their plans so they can all feel comfortable about addressing safety concerns. Some activities – such as swimming – can pose additional risks for those with epilepsy if they have a seizure. Concerts with flashing lights, for example, also may trigger a seizure.
Set safe driving expectations
Getting a learner’s permit and driver’s license are highlights of the teen years. Teens with epilepsy face more obstacles with this milestone.
States regulate driver’s licenses for those with epilepsy differently. To get a driver’s license in most states, a person with epilepsy must be free of seizures that affect consciousness for a certain period. Seizure-free time frames vary from state to state.
Teens should understand that driving is a privilege. All drivers must take into account the safety of others on the road. It may be tempting for teens not to tell their parents about a seizure because they’re afraid they’ll lose their license. That’s why parents must stress the consequences an accident can have not just for the driver but for others involved and whether there could be legal ramifications if the seizures hadn’t been disclosed.
Evaluate seizure control medications
Changes in kids’ bodies as they enter adolescence could also require changes in medications used to control epileptic seizures. Schedule checkups to keep tabs on this. Consider letting teens have one-on-one time with their doctor to discuss concerns without a parent’s listening ear.
Often, teens begin to take responsibility for taking their seizure medications, rather than their parents dosing the medicine. This, understandably, makes parents anxious.
To encourage teens to stay on top of their doses, parents should explain that taking their medication on time is one way to gain more independence. For example, missed doses can lead to a seizure, which could also lead to losing the ability to drive for a while.
Teens also need to be aware of how their medication will interact with alcohol – another reason for them to avoid drinking. Alcohol and illegal (and some legal) drugs can increase the risk of a seizure.
Seizure medication can also affect some birth control pills. According to the American Academy of Pediatrics, this can result in abnormally high or low levels of seizure medication or ineffectiveness of the birth control medication, leading to poor seizure control or unintended pregnancy.
Encourage teens to get enough sleep
Whether they stay up late to stream movies, play video games, scroll through Tic-Tok or study, teens adopt whacky sleep schedules.
Sleep deprivation isn’t healthy for anyone, but a lack of sleep can trigger epileptic seizures. During normal sleep-wake cycles, changes occur in the brain’s electrical and hormonal activity. These changes can affect why some people have more seizures while sleeping than others, and why not getting enough sleep can trigger seizures, the Epilepsy Foundation explains.
How NeuLine can help
If your doctor recommends an EEG (electroencephalogram) to evaluate seizure medication effectiveness for your teen, NeuLine Health can provide an at-home, ambulatory EEG. A 72-hour at-home EEG is much less disruptive to a teen and family’s schedule than going to an epilepsy monitoring unit for one.
For more information, contact NeuLine Health at (844) 212-5321 or visit our website.
Around ten years ago, the Food and Drug Administration (FDA) acknowledged the unmet need — and urgency — of including patient perspective in drug and device development in a systematic way.