Archive for epilepsy
Status epilepticus: What’s changed, what to know, and a global perspective
Status epilepticus, or a prolonged seizure lasting more than five minutes, is a rare complication of epilepsy and a medical emergency that can occur even in people without a diagnosis of epilepsy. If not treated quickly, it can cause brain damage, lifelong complications, and even death. “A prolonged seizure is a race against time to ... Read More about Status epilepticus: What’s changed, what to know, and a global perspective
For Fiadh: Pushing the envelope to treat drug-resistant epilepsy
Fiadh is a bubbly and empathetic 4-year-old. And if you ask her parents, Elaine and Dario, she’s also mischievous and wild. “She knows when she shouldn’t be doing something,” Elaine says. “Then she gives you a look, giggles, and does it anyway.” Fiadh’s tenacity likely comes from her mother, which is a good thing. After ... Read More about For Fiadh: Pushing the envelope to treat drug-resistant epilepsy
Finding epilepsy hotspots before surgery: A faster, non-invasive approach
Neurosurgery for patients with drug-resistant epilepsy requires locating the precise brain areas that are generating the seizures. Typically, patients undergo 7 to 10 days of invasive intracranial EEG monitoring, with electrodes surgically implanted inside the brain through one or more skull openings to capture seizure activity as it happens. Eleonora Tamilia, PhD, directs the Epilepsy ... Read More about Finding epilepsy hotspots before surgery: A faster, non-invasive approach
Can we prevent seizures in Sturge-Weber syndrome?
Port wine stains — capillary malformations on the skin — are the most visible manifestation of Sturge-Weber syndrome. However, up to 60 percent of babies with birthmarks in high-risk locations (forehead and upper eyelid) also have capillary malformations in their brain. Of these, 75 to 90 percent will experience a seizure before the age of 2, ... Read More about Can we prevent seizures in Sturge-Weber syndrome?
Exploring brain operations: Making decisions, snapping to attention, and forming memories
How do our brains snap to attention and orient us to the outside world — like when we’re sound asleep and the smoke alarm goes off? And when different choices confront us, how does our brain make decisions? Two groups of researchers at Boston Children’s explored these all-important brain operations. The first study, published February ... Read More about Exploring brain operations: Making decisions, snapping to attention, and forming memories
Infantile spasms: Speeding referrals for all infants
Infantile epileptic spasms syndrome (IESS), often called infantile spasms, is the most common form of epilepsy seen during infancy. Prompt diagnosis and referral to a neurologist are essential. Infantile spasms can present subtly, and research indicates that diagnosis is often delayed. Additionally, infants are especially likely to experience delays in referral to a neurologist if ... Read More about Infantile spasms: Speeding referrals for all infants
Writing the book on infantile spasms: Charlotte’s story
When Charlotte, 3, developed infantile spasms last year, her parents, Kate and Brett, entered a world they didn’t know how to navigate. Inspired by their daughter and the care she received at the Epilepsy Center at Boston Children’s Hospital, they set out to help other families facing similar experiences. Nervous parent instincts prove right “I ... Read More about Writing the book on infantile spasms: Charlotte’s story
All in the family: One family’s shared link to epilepsy and fight for answers
One of the wonders of parenthood is seeing the traits you pass along to your kids, like your eyes or your laugh. For the Anderson family, however, one shared trait is more complex: a mutation in the NPRL3 gene that leads to epilepsy. It took four generations to uncover the family’s genetic link to the ... Read More about All in the family: One family’s shared link to epilepsy and fight for answers
Lessons from Emma: Mom shares how RNS has changed their lives
Emma’s journey with the Epilepsy Center at Boston Children’s Hospital began three years ago when she came to Boston Children’s with her parents for help managing her seizures. In Boston, Emma, Lynda, and Danny found answers to their questions, a (temporary) new home, and hope for Emma’s future as she embarked on responsive neurostimulation (RNS) ... Read More about Lessons from Emma: Mom shares how RNS has changed their lives
How genetic testing helped Wilson help other infants with epilepsy
In August 2021, after months of anticipating their son’s arrival, Emily and Nick felt as ready as they’d ever be to become parents. Happy and excited to finally have Wilson in their arms, they brought him home a few days after delivery. Just over 24 hours later, though, they found themselves back in a hospital ... Read More about How genetic testing helped Wilson help other infants with epilepsy