Archive for seizures
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
All in it for Hudson: A family’s shared path with cavernous malformations
Three-year-old Hudson loves trucks and PAW Patrol. He’s a delightful blend of sweet, fun, and feisty, and — after a seizure on New Year’s Day led to an extended stay at Boston Children’s Hospital — he’s an inspiration to his parents, Gabrielle and Matthew. To Matthew specifically, Hudson provides a new look at his own ... Read More about All in it for Hudson: A family’s shared path with cavernous malformations
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?
Helping Jasmine manage Sturge-Weber syndrome before symptoms start
Sturge-Weber syndrome is a rare neurovascular disorder that increases the risk of seizures in infants due to abnormal blood vessel development in the brain. Almost 90 percent of children with Sturge-Weber experience their first seizure before age 2, which makes proactive, seizure-preventive care important in minimizing the risk of long-term brain injury. Finding such care, ... Read More about Helping Jasmine manage Sturge-Weber syndrome before symptoms start
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
Homecoming: Jack’s complex care brings a family back to Massachusetts
Georgia and her husband, Keith, moved to North Carolina from Massachusetts in 2015 with a dream of building a house and starting a family. Their plans changed, however, when their son Jack was born in 2017 with severe health complications, including a rare and severe form of childhood epilepsy called Lennox-Gastaut syndrome and a rare ... Read More about Homecoming: Jack’s complex care brings a family back to Massachusetts
A model patient: Alexia’s triumph over moyamoya disease
If you’re lucky enough to get time on Alexia’s packed schedule, you’re in the company of a motivated and ambitious young woman who — in the face of a scary diagnosis — shows others they can do anything they put their mind to. From subtle symptoms to diagnosis Alexia’s fight against moyamoya disease, a rare ... Read More about A model patient: Alexia’s triumph over moyamoya disease