Stories about: epilepsy

Forever grateful: Finding the best epilepsy doctors for my son

James, who had surgery for seizures, poses for his first day of third gradeWhen James arrived at 3 pounds, 15 ounces and 15 inches long, he stole my heart. He wrapped his tiny fingers around my own and I hoped he would never let go. He met all of his milestones, with the exception of being a little behind in his speech. We were about to put him in speech therapy when we learned he had a much bigger problem.

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Summer movie safety: What parents of kids with epilepsy should know

People sitting in a dark theater

If you’re headed to the movies over this holiday week, a word of caution about the popular Disney sequel Incredibles 2. Earlier this month, the Epilepsy Foundation issued a statement about the film, warning that some people have had seizures while watching the movie. In response, some movie theaters have posted warnings about the film.

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What can I do if there is no approved treatment for my child’s rare disease?

Just one tough question of many asked — and answered — during a social media Q+A held in observation of this year’s Rare Disease Day on February 28. Rare disease specialists, patients and advocates from across the country took to Twitter to offer their firsthand advice for dealing with a newly-diagnosed (or undiagnosable) rare disease. 

If your or your child’s rare disease does not yet have a treatment option, you can get involved in natural history research…

Over Twitter, our story headline and other questions were posed by the National Organization for Rare Disorders (NORD) and The Mighty, a digital health community that empowers and connects people who are facing disease or disability. Dr. Phillip Pearl, who directs Epilepsy and Clinical Neurophysiology and studies inherited metabolic epilepsies at Boston Children’s Hospital, offered his recommendations through a series of tweets from the @BostonChildrens Twitter account.

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Dealing with a diagnosis of epilepsy: Common questions from parents

Illustration of brain with epilepsy

A diagnosis of epilepsy can seem overwhelming: You likely have a lot of questions about how seizures — and their treatment — will affect your child’s life and what that might mean for your family. That’s why education is crucial for helping ensure that you understand as much as possible about the condition. Events such as the Fifth Annual Epilepsy Awareness Day at Disneyland are wonderful opportunities to learn from experts and from other families. Here, Dr. Arnold Sansevere of the Epilepsy Center at Boston Children’s Hospital answers five common questions from parents and kids.

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