A Comprehensive Approach
Many specialists contribute to your child’s evaluation and care plan. All team members -- including specialists in neurology, cardiology, child behavioral health, medical genetics, neurodevelopment, neuropsychology, occupational therapy, physical therapy, psychiatry, sleep medicine, and speech therapy -- have extensive experience and specialize in caring for children with AHC.
Experience with AHC and Related Rare Conditions
Duke is uniquely positioned to diagnose and manage atypical alternating hemiplegia of childhood, meaning AHC that doesn't meet specific criteria or isn't caused by the classic ATP1A3 gene mutation. We also treat other rare conditions caused by different mutations in the same gene -- febrile induced paroxysmal weakness and encephalopathy (FIPWE), epileptic encephalopathy, relapsing encephalopathy with derebellar ataxia (RECA), and CAPOS syndrome -- as well as other conditions associated with ATP1A3.
Duke doctors and researchers discovered the ATP1A3 gene mutation that is now known to be a leading cause of AHC. This 2012 breakthrough paved the way for additional research that may lead to effective new treatments and possibly a cure.
Access to Clinical Trials
Your child may be eligible to participate in ongoing clinical trials as a patient at Duke. We are the lead center for the International AHC Research Consortium’s OBSERV-AHC study. This long-term effort will monitor the natural history of AHC, to better understand the factors that determine health outcomes. Our involvement in research helps us test promising new treatments, such as gene replacement therapy, before they’re approved for study or use in humans.
We Work with Your Doctor
Families travel to Duke from across the country and around the world for alternating hemiplegia of childhood care. We work closely with your local doctor, so your child receives the most comprehensive care possible no matter where you live.
Access to care at Duke doesn’t end when your child reaches adulthood. We continue to see patients of all ages who are affected by AHC.
We understand families may be traveling to Duke from far away, and alternating hemiplegia of childhood evaluations can take several days. We can arrange local lodging and coordinate transportation to and from the appointments. And through our partnership with Cure AHC, it is possible to meet other parents and children affected by AHC while receiving care at Duke.