Mother underscores importance of diagnosing ESES epilepsy early

June 7, 2018

By Deron Hamel

Jennifer Young says parents should be aware of the symptoms of Electrical Status Epilepticus during Sleep (ESES) epilepsy, a condition that appears in childhood and does not present itself through seizures but rather as learning difficulties and behavioural changes.

Jennifer’s son was diagnosed with ESES when he was seven years old and in Grade 2. It was a “very sudden change,” she says.

The first sign Jennifer says she noticed in her son was that he was suddenly having learning difficulties at school. He then began experiencing behaviours he had not previously had; he had done well in school his previous year. His clothes were also bothering him so much he had a difficult time getting out of his pyjamas in the morning, and he couldn’t wear gloves in winter because they bothered his hands.

She took her son to their family doctor. An MRI and an EEG were ordered. While the MRI didn’t show anything, the EEG showed some abnormalities, so Jennifer’s son was eventually referred to a neurologist at McMaster University Medical Centre, who ordered a sleep-deprived EEG test which shed more light on his condition.

What doctors discovered was that Jennifer’s son was having epileptiform discharges that were not causing visible seizures in his sleep.

“They had him on treatment right away,” Jennifer says.

Jennifer says her son’s symptoms seemed “psychological.” There was no visible indication her son had been having seizures, so she credits the family’s doctor for pushing for more testing. It was the doctor’s diligence, she says, that led to her son being diagnosed with ESES.

“If it wasn’t for her, I don’t know where we would be; she has done a lot for us on our whole medical journey,” Jennifer says.

Jennifer says some of the symptoms parents may notice in children with ESES epilepsy are sudden changes in behaviour; ADHD-like symptoms, including difficulty in school; language regression; and difficulty sleeping.

Because Jennifer’s son was diagnosed early, doctors were able to control the epileptic activity he was experiencing with medication. But if ESES epilepsy is not detected early, it can become more severe.

Now nine years old, Jennifer’s son is enjoying a better quality of life, Jennifer says, adding that he continues to be monitored by his neurologist. He plays baseball, spends time with other children and his schoolwork has improved.

“It’s day and night,” Jennifer says. “It was unbelievable to get our son back.”

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One response on “Mother underscores importance of diagnosing ESES epilepsy early

  1. Shelly

    Hi, I am very interested to speak to Jennifer and the Dr involved in this treatment. My niece has ESES, we are based in the UK and having problems finding someone that actually deal with this rare form of epilepsy.
    We would be grateful if you can either pass on my email address or put me in touch with them. Thank you Shelly

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