Ohtahara syndrome, early infantile epileptic encephalopathy with burst-suppression
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Although it was initially published that no genetic connection had been established, several genes have since associated with Ohtahara syndrome.
His daughters were born with a rare and catastrophic neurologic condition known as "Ohtahara Syndrome."
Ohtahara syndrome is a rare but severe epilepsy syndrome usually starting in the first few days or weeks of life.
He suffered from Ohtahara syndrome, a very rare form of epilepsy characterised by spasms which start in the first days of life.
But Ivan's condition, Ohtahara Syndrome, meant that a comfortable lifestyle had to take second place to the needs of their son.
Ivan's early death was not unexpected, given the severity of his form of epilepsy, known as Ohtahara syndrome, which requires round-the-clock care.
Their first child Ivan, who had cerebral palsy and Ohtahara syndrome, a severe form of epilepsy, which meant he needed 24-hour care, died in February 2009 aged six.
Ohtahara syndrome is rare and the earliest-appearing age-related epileptic encephalophy, with seizure onset occurring within the first three months of life, and often in the first ten days.
Ivan was diagnosed with the rare neurological condition Ohtahara syndrome shortly after his birth in April 2002, when his parents noticed that he was unresponsive and made small, jerky movements.
The spike-and-wave pattern is most commonly researched in absence epilepsy, but is common in several epilepsies such as Lennox-Gastaut syndrome (LGS) and Ohtahara syndrome.
Ohtahara syndrome (OS), also known as Early Infantile Epileptic Encephalopathy with Burst-Suppression (EIEE), is a progressive epileptic encephalopathy.
Their first child, Ivan Reginald Ian, was born on 8 April 2002 in Hammersmith and Fulham, London, with a rare combination of cerebral palsy and a form of severe epilepsy called Ohtahara syndrome, requiring round-the-clock care.