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What is Ohtahara Syndrome?

Nov 15th, 2023 | by Kate Alexander

Kate Alexander

November 15th, 2023

What is Ohtahara Syndrome?

Ohtahara syndrome, or Early Infantile Developmental and Epileptic Encephalopathy (EIDEE) is a rare epilepsy disorder, characterized by drug-resistant seizures and developmental delay, with onset usually within the first three months of life, but often within the first ten days. Ohtahara Syndrome occurs in 10 in every 100,000 live births.

What Causes Ohtahara Syndrome?

There are several known causes of Ohtahara syndrome, including structural abnormalities of the brain, metabolic disorders, or gene mutations. However, some cases have no known cause. Girls and boys are equally affected by Ohtahara syndrome.

What Challenges Will Children with Ohtahara Syndrome Face?

Tonic seizures (stiffening of muscles, upward eye gaze, pupil dilation, altered breathing) are most common in infants with Ohtahara syndrome, although they may also experience focal seizures (involving only one part of the brain), and rarely, myoclonic seizures (sudden jerks or twitches). It is not uncommon for children with Ohtahara syndrome to present with more than one type of seizure.

Other symptoms include:

What Are Some Treatment Options for Ohtahara Syndrome?

There is currently no cure for Ohtahara syndrome, although epilepsy surgeries are often considered for suitable candidates, with the aim to improve seizure control. Early intervention should begin as soon as possible following a diagnosis of Ohtahara syndrome, as it can support development in areas of gross motor, fine motor, communication, cognition, and social-emotional skills. Physiotherapy may focus on improving mobility, muscular strength, coordination, and endurance. Occupational therapy may target improving upper limb strength and functional use, and posture to support activities of daily living, such as dressing. Speech and language pathology may support increasing speech intelligibility (i.e., ability to be understood) as well as developing expressive and receptive language.

About the Author

Kate is a paediatric physiotherapist at NAPA Centre Sydney. Kate knows that a little bit of fun and laughter is the key to getting the job done. After seeing the benefits of intensive therapy firsthand, Kate is excited to help make a difference in the lives of NAPA kids and their families.

About NAPA Centre 

NAPA Centre provides paediatric therapy services to children diagnosed with Acute Necrotising Encephalopathy. Learn more about treatment options in this blog post.NAPA specialises in working with children with physical and neurological delays. In addition to working with children with more common diagnoses such as cerebral palsy and Down syndrome, NAPA has a special interest and expertise with children with rare, multiple and complex conditions. NAPA Centre’s Intensive Model of Therapy (IMOT) is world-renowned, and one of the leading clinics in Australia for paediatric therapy programs with a large multi-discliplinary team of Occupational Therapists, Physiotherapists and Speech Therapists all working together. Families routinely travel from all parts of Sydney, the NSW region, from across Australia and even from the Australasian region to access NAPA’s unique and effective programs for their children.

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