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Learn About Rare Disease >    Ohtahara Syndrome

Ohtahara Syndrome

Ohtahara syndrome is a rare form of epilepsy in infants. There are many causes of Ohtahara syndrome including genetic mutations, brain malformations, and metabolic causes.

Key characteristics and symptoms of Ohtahara syndrome

KEY CHARACTERISTICS

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.

OTHER COMMON SYMPTOMS

  • Motor problems
  • Intellectual disability

How is Ohtahara syndrome diagnosed?

A diagnosis of Ohtahara syndrome is based on assessment of symptoms and an abnormal EEG that shows a burst-suppression pattern.

How is Ohtahara syndrome treated?

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.

AmbitCare can help you understand how rare disease might be part of your story.

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.

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Have additional questions? Contact an AmbitCare Ambassador by phone at 1-877-584-8995 or by email at info@ambitinc.com today.

Our hours of operation are Monday-Friday, 9-5pm ET. An AmbitCare Ambassador will typically respond within 1-2 business days.

* Please note that while AmbitCare Ambassadors can help you better understand what resources are available for families with loved ones suffering from seizures and developmental delays, they are not licensed medical providers and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments.