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Questions to Ask When Seeking a Child Neurologist

If your child’s condition is uncommon, ask if the institution has pediatric neurologists who have cared for other children with this condition. A program or clinic dedicated to this condition is a plus: Its staff are often very knowledgeable about day-to-day life with the condition and can often connect you with other families. Ask how many patients the program sees.

Although a knowledgeable child neurologist is important, ask if the team has dedicated nurse practitioners to help you manage your child’s care. A neuropsychologist should also be available for detailed cognitive and behavioral assessments as needed. If you want care for related medical conditions such as respiratory or urologic problems, ask whether the appropriate specialists would be part of your child’s care team and whether you’ll receive help in coordinating care.

As important as the medical team is, also ask about staff such as social workers or resource specialists. They can provide day-to-day coping tips, connect you with services in the community such as early intervention, help you transition your child back to school and other activities, and help you obtain special education services.

Academic hospitals with large numbers of patients with specific disorders often have specialized research programs to understand the condition’s biology, sometimes through genetic testing. Researchers may start their own clinical trials, or the hospital may participate in multi-center or company-sponsored trials.

Ask the program whether it tracks patients in a registry and whether it shares outcome measures with other institutions and national groups and studies, such as the Pediatric Neurocritical Care Research Group, the National Healthcare Safety Network, and the International Pediatric Stroke Study. Sharing maintains accountability and leads to insights that can improve care and help families know what to expect in the future.

If your child is having seizures, for example, you will want to have access to an electroencephalography (EEG) lab staffed by board-certified EEG and electrophysiology technologists 24/7 to pick up nighttime seizure activity. You may also need a center that can provide long-term video EEG, functional magnetic resonance imaging (MRI), or magnetoencephalography (MEG) to get detailed information on brain function.

Such testing is very helpful in determining your child’s level of functioning over time, gauging whether treatments are working and deciding whether your child is ready to start (or go back to) school.