Coping with Medical Trauma
Raising a child with a complex medical condition changes you forever. I’ve been walking this road for 21 years, ever since my son was an infant with catastrophic, drug-resistant epilepsy. At age two, he
How to Navigate a Hospital Stay with Your Child: The Ultimate Survival Guide
The moment you walk into your child’s hospital room, it hits you. The sterile walls, the pungent scent of the hand sanitizer, the beeping monitors, the small hospital bed – it can all feel
Fiadh’s Journey: Navigating SEEG and Surgery for Drug-Resistant Epilepsy
Guest blogger: Elaine O’Loughlin, PhD Our daughter Fiadh (Fia) was diagnosed with infantile spasms at 5.5 months old. While the spasms resolved with steroids, another seizure type quickly emerged: focal tonic seizures. Her seizures
Navigating Adulthood with Severe Epilepsy: A Caregiver’s Guide to Transition
If you’re reading this, you’re probably a parent or caregiver of a child with severe epilepsy—the kind that doesn’t just disrupt life with seizures but shapes every part of it. Maybe your child has
Highlights from the 2024 AES Annual Meeting
In December, our team attended the 2024 American Epilepsy Society (AES) Annual Meeting in Los Angeles. This conference gives epilepsy experts and advocates a chance to share research and innovations to improve care for
Fear the Spasms, Not the Surgery: Hope for Infantile Spasms
At five months old, my son was diagnosed with infantile spasms (IS)—a rare, catastrophic form of epilepsy. Before his diagnosis, his unusual movements were mistaken for startle reflexes, and his frequent crying was thought
Navigating Employment After Epilepsy Surgery
My son had a hemispherectomy as a toddler to stop his seizures, and now, as a young adult, we are navigating the world of adulthood together. He graduated from high school two years ago,
Caregiver Survey – Your Voice Matters!
Share your experience and help others We’re proud to partner with the Child Neurology Foundation to conduct a survey to understand caregivers’ experiences raising children with neurologic conditions. This Needs Assessment Survey is designed
Neurology Social Services Network – A Powerful Partnership
Your Support System Just Got Bigger We are excited to announce our new partnership with Unite Us and the Child Neurology Foundation. This collaboration is designed to connect parents and caregivers with a wide
Alert! Medicaid and CHIP Renewals
Don’t risk a gap in your Medicaid or CHIP coverage. Get ready to renew now. Your renewal may have been on pause due to the COVID19 pandemic, but it’s making a comeback. Be sure