Stories about: epilepsy

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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Looking to the future: Robot-assisted surgery offers hope for Brendan

Brendan is back at the bowling alley after surgery for epilepsy

Brendan Randolph focuses on the lane in front of him, takes a few steps and lets the ball fly down the lane. He waits to see where it lands and then turns back, grinning with satisfaction: With all ten pins down, it’s a strike. Bowling is one of his favorite pastimes, and he’s thrilled to be back at it. That’s no small feat for this 17-year-old, who underwent brain surgery just a few months ago.

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Enjoying life, finally free of seizures

surgery for seizures

Kristen Grip stood in the middle of the basketball court, motionless. Around her, the action continued as usual — the smack of the ball on the polished wood floor, the rush of her teammates as they darted back and forth, the satisfying swish and shout of victory as someone made a basket. Yet the high school freshman stared vacantly into space, her only movement a small tap of her fingers together.

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