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Neurological Disorders

How Telehealth Is Making a Difference for Children With Rare Disorders

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Will the future of doctor’s appointments be from the comfort of your couch? Learn how telehealth is supporting the families of children with neurological disorders.

Telehealth has revolutionized the way families receive medical care in the United States. It has increased access to care from the convenience of patients’ homes, and for families of children with rare neurological conditions, telehealth has even more benefits.

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Prior to the pandemic, child neurology families in the United States waited nine weeks on average for their first visit with a neurologist. During that time, children’s symptoms worsened, families’ stress increased, and no progress was being made toward a diagnosis or treatment. With the support of telehealth, however, almost half of all patients have been able to receive a neurology appointment within a week of their request, according to a Telehealth Satisfaction Survey from the Child Neurology Foundation (CNF). Eighty percent of parents surveyed by CNF said the overall convenience was much better with telehealth than with in-person visits. The same is true from the clinical side, since neurologists can see significantly more patients each day without sacrificing the quality of care.

While many families have used telehealth over the past two years, some are only now considering virtual visits for the first time. If your family is new to telehealth, here are some tips to have a successful visit:

Understand telehealth guidelines

States have different rules about who doctors can treat out-of-state. If you live in a different state than the doctor’s office, confirm that your doctor can offer you a virtual visit.

Get comfortable with the technology

Familiarize yourself with your doctor’s telehealth system (often within their patient portal) and test your device’s ability to connect ahead of time. If you run into any issues, reach out to your doctor’s office to troubleshoot before the actual appointment.

Prepare your questions and concerns like you would for a normal visit

Have a list of medications your child takes and send it, as well as any questions you may have, ahead of time. This allows you to address your biggest concerns during the actual visit.

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Offer to assist during the visit

Your doctor may ask you to bend your child’s limbs in a particular way or encourage reflexes. Speak up whenever you feel uncomfortable or confused with something the doctor is requesting; it’s a learning opportunity for both you and your child’s provider.

Know that your doctor is still here for you

Even though you may not be able to see them in person, they still want to give you and your child the best care possible. Do not hesitate to reach out to them with your questions and concerns. These are just a few tips to help your family feel comfortable during your telehealth visit. For more resources, visit CNF’s Telehealth Hub at childneurologyfoundation.org/telehealth.

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