Archive for seizures
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
Which children in status epilepticus are most at risk?
Status epilepticus, a prolonged, potentially life-threatening seizure, is epilepsy’s most severe manifestation. Patients known to have refractory status epilepticus are more likely to need ICU care if initial treatment is delayed. But what about the broader population of children who come to the emergency room in status epilepticus? Are there any early indicators to predict ... Read More about Which children in status epilepticus are most at risk?
A family’s search for answers and hope for PACS1 syndrome
Alya, 9, was about three weeks old when her mother, Taruna, noticed movements and behaviors she was concerned might be seizures. What followed were multiple hospitals, multiple tests, and eventually a diagnosis of PACS1 syndrome. This rare genetic neurodevelopmental disorder can lead to intellectual disabilities and delays and currently has no cure. “We were told to ... Read More about A family’s search for answers and hope for PACS1 syndrome
Inspired by her daughter, one mom helps families navigate complex epilepsy
Colleen Gagnon felt something wasn’t right soon after her daughter Niamh was born but tried to convince herself she was just overthinking. Fighting her instincts as a nurse and second-time mom, Colleen tried to link the dimple in Niamh’s forehead and darting eye movements to her being born six weeks early. But an eye doctor’s ... Read More about Inspired by her daughter, one mom helps families navigate complex epilepsy
‘Mom, my brain feels better.’ One mother’s story of her daughter’s fight with epilepsy
Liliane has a lot to be grateful for this holiday season. Until just this year, her 16-year-old daughter Emily, who has epilepsy, suffered relentless seizures that left her temporarily unable to speak or stand. The seizures began when Emily was 4, and living her life around them was all she knew. But today, Emily is ... Read More about ‘Mom, my brain feels better.’ One mother’s story of her daughter’s fight with epilepsy
Back from the bench: How my AVM was a new beginning
It’s crazy how something you once thought was the worst thing that could ever happen to you turns out to be one of the best. My AVM is one of those things. My name is Davidson Jump. I’m from a small town in Ohio where football — high school football especially — is a big ... Read More about Back from the bench: How my AVM was a new beginning
New insight into dietary approaches for epilepsy
Fasting has been believed since ancient times to curb seizures in epilepsy, and small patient studies in the early 1900s have revived the idea. But the reasons have remained mysterious. New research from Boston Children’s helps explain how fasting affects the brain at the molecular level. The findings could lead the way to new approaches ... Read More about New insight into dietary approaches for epilepsy
Chasing Rett syndrome biomarkers: Could overnight EEG studies improve care?
In Rett syndrome, a genetic condition affecting girls almost exclusively, mutations in the MECP2 gene cause a regression of language and motor skills starting at 12 to 18 months of age. Children then usually stabilize, but how Rett will ultimately affect them is hard to predict. Some girls develop epilepsy; others have no seizures at ... Read More about Chasing Rett syndrome biomarkers: Could overnight EEG studies improve care?
Seeds of hope for Annie: one family’s story of epilepsy care
Ten-year-old Annie Dinan experienced her first noticeable seizure just before her fourth birthday while riding in the car with her family. “I had never seen a seizure in my entire life,” her mom, Lindsay, says of witnessing Annie lose then quickly regain consciousness. “But somehow, I knew exactly what it was.” Refusing to settle Following ... Read More about Seeds of hope for Annie: one family’s story of epilepsy care