Seizures: Stiffening of the arms or legs (tonic seizures) that lasts for just a few seconds and occurs in clusters. Other types of seizures may occur, but tonic seizures are the most common. Seizures typically begin within the first three months of life.
Developmental delays: Many patients with Ohtahara syndrome experience delays as they grow older and seizures progress.
A diagnosis of Ohtahara syndrome is based on assessment of symptoms and an abnormal EEG that shows a burst-suppression pattern.
Currently there is no cure for Ohtahara syndrome. Patients are treated for their symptoms, not for the underlying cause of the disease. Seizure control is the primary goal for patients with Ohtahara syndrome. Researchers are analyzing patient data to better understand the condition and all potential causes so a cure may be found.
The average person with a rare disease sees 7.3 specialists over a span of 5-7 years before receiving an accurate diagnosis. AmbitCare Ambassadors provide free services including listening to understand your challenges, guiding you on potential next steps, and recommending resources.