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EPILEPSY AWARENESS: Mother Calls For Epilepsy Awareness Around Water

EPILEPSY AWARENESS: Mother Calls For Epilepsy Awareness Around Water
Sandrine Baun's son Jeremy, 8, had a seizure in July at the beach. She would like to see lifeguards and others be able to recognize the symptoms.

Sandrine Baun’s son Jeremy, 8, had a seizure in July at the beach. She would like to see lifeguards and others be able to recognize the symptoms.SEIU

In a split second, Sandrine Baun’s son Jeremy was in crisis.

The 8-year-old was playing at the water’s edge of a local swimming area with his two sisters when he began convulsing.

Baun said she had turned her head for a moment and when she looked back, Jeremy, who has epilepsy, was flailing helplessly.

To the lifeguards nearby, the grand mal seizure didn’t look much different from the other kids’ playful splashing, Baun said.

That’s what worries Baun.

Baun went to help her son but had trouble pulling him out of the water. She called for the lifeguards, who helped carry him to her beach towel so he wouldn’t hurt his head, but left soon after and didn’t offer further assistance.

“He had a major life-threatening event in the water, and I felt like there was a lack of understanding,” Baun said.

Baun declined to name the swimming area where Jeremy had the seizure and emphasized that the incident was a result of ignorance, not carelessness.

While seizures can appear different in different individuals, Baun said Jeremy’s usually last around two minutes. During that time he sometimes stops breathing and his lips turn blue.

She has emergency medication she administers similar to an Epi-Pen, but if the seizure lasts longer than five minutes Baun said she needs to get Jeremy to a hospital.

Jeremy attends a day camp at Winding Trails in Farmington this summer, and his recent seizure prompted the facility to hold training for its lifeguards Thursday with the Epilepsy Foundation of Connecticut.

Scott Brown, the camp’s executive director, said there are multiple children with epilepsy who attend the camp and the training is an effort to keep children safe while still allowing them to fully participate with their peers.

Seizures can occur for a variety of reasons, not just epilepsy, and some individuals unknowingly live with epilepsy for years before having their first major seizure.

Allison Gamber, associate director of the Epilepsy Foundation of Connecticut, said statistically, “one in 100 people have epilepsy, so that’s pretty profound, and one in 10 people will have a seizure in their lifetime.”

Gamber said the organization offers training on seizure recognition, first aid and other services to a variety of organizations, often for free.

The lifeguards should have identified Jeremy’s seizure, Gamber said, and offered to call emergency services to check on the boy’s condition.

Bailey Dailey, recreation coordinator for Winding Trails, said the camp’s lifeguards, 10 to 12 of whom are on duty at any given time, are eager to learn anything that might help keep patrons safe.

“We want to expand our training and do whatever we can do,” Dailey said. “If there’s more that we can learn from the Epilepsy Foundation and this training, why not do it?”

Jeremy’s younger sister also has epilepsy but Baun said that so far, her seizures have been controlled by medication. Jeremy’s seizures keep recurring despite treatment, however, and she worries that his desire for more independence will put him in danger if those around him don’t recognize when he’s in distress.

Seeing her son have seizures and knowing that he might find himself in a situation where he’s left to struggle is, “devastating,” Baun said. “I’m looking for more awareness and maybe more compassion.”

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1 Comment

  1. Dear Sandrine,
    I have a 25 year old daughter who also has generalized tonic-clonic seizures. I understand the fear you are experiencing . Myths and ignorance about this disorder have perpetrated our society throughout history. The one thing to do is to educate people so that they will know the facts about what to do in an emergency and the facts about epilepsy. Have you ever considered joining a public speaking and leadership club like Toastmasters International? I got involved with this organization after I became a trained H.O.P.E. mentor and advocate for people with epilepsy.I was trained by the Epilepsy Foundation of Eastern Pennsylvania. I enjoy educating people about this disorder and have found some interesting ways to deliver my message. I speak in schools, rotary clubs, and at my local toastmasters club so that the world will be a little safer for my daughter and other people with this disorder. This makes me feel that I have some control over this uncontrollable at times monster called epilepsy that invades our home, sometimes when least expected.
    Good luck to you and your son as you navigate this challenge in your lives. May it lead you to be the voice of epilepsy awareness in your community.
    P.S.Remember also that nobody has any guarantees in life. You can respond to these challenges in a positive way to teach your son how to deal with epilepsy and other challenges he may face in life.

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