If your child is newly diagnosed with epilepsy, finding a pediatric neurologist who is a good match for your family can make all the difference. “Just as every child is unique, so is every epilepsy journey,” says Cate Brocker, senior director of programs and partnerships at the Epilepsy Foundation. Here are some ways to find the best doctor for your child’s treatment.
Start with your pediatrician. Your pediatrician can help refer you to a pediatric neurologist, and you can also inquire through the Epilepsy Foundation (epilepsy.com), which has a 24-hour helpline (1-800-332-1000). A highly recommended pediatric neurologist may have a wait of several months or more. “Ask to be put on the waitlist, and don’t be afraid to follow up,” says Brocker.
Make the most of an initial consultation. Maximize your visit with the neurologist by organizing all the information you have ahead of time (try a seizure diary app like Nile). That includes your child’s seizure history, medical records, your list of concerns and questions, and coming prepared to discuss your short- and long-term goals, says Brocker. If it’s possible for your child, encourage them to communicate during the visit, such as by describing their own symptoms.
Share everything. “A lot of people have fears and concerns and unanswered questions. They need to be honest if they didn’t hear something, and they shouldn’t feel bad,” says M. Scott Perry, M.D., a pediatric neurologist at the Jane and John Justin Institute for Mind Health at Cook Children’s.
Ask how the office team functions. Knowing how the whole office operates can help you determine if the provider is right for your family, as well as help you know what to expect. For example, are they a teaching center, or will residents be coming in and out of visits? Do they have an on-call service or patient portal for after-hours questions? Finally, ask about a multidisciplinary approach, so you’re aware of other options—such as nutrition consulting—that might be available.
Discuss the level of care you need. Most children’s seizures will be brought under control with medication. However, if seizures persist, your pediatric neurologist may suggest visiting an epilepsy center, which can provide a more comprehensive team approach. Your doctor may recommend a specific center, or you can find one near you at the National Association of Epilepsy Centers (naec-epilepsy.org).
Don’t be afraid to ask for another opinion. A doctor should have empathy and a good bedside manner with children, notes Brocker. If yours doesn’t, it may be time to look for a new physician. Ultimately, the goal of the parent and the provider should be the same: to work towards the best possible care for your child.