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Chilliwack boy with rare syndrome that causes seizures loses access to ‘rescue medication’

Hampton Gaudet has had 20 seizures at school so far this year
Seven-year-old Hampton Gaudet of Chilliwack with mom Michelle, dad Chris and two-year-old sister Rosie.(Submitted photo)

Chilliwack mom Michelle Gaudet is frustrated by what she says is a bureaucratic decision by the Ministry of Health that is endangering her son’s life.

Hampton Gaudet is in grade 2 at Yarrow Community Elementary School where he has had 20 seizures so far this school year.

The seven-year-old has Sturge-Weber syndrome, a rare and incurable brain condition that leads to seizures, some of which are triggered by touch.

“If he hits his right foot on things it causes him to have seizure,” Michelle explained.

“He’s had a seizure a couple of times and been injured. He’s fallen and knocked his two front teeth out. He’s had stitches in his face, a broken foot.”

Hampton has minor seizures and he has major seizures, some of which aren’t triggered by touch. But what helps quickly is a specific drug, Midazolam, a benzodiazepine.

This rescue medicine is taken orally but the person administering the drug needs training. Once or twice a year, someone from the provincial-government funded Nursing Support Services (NSS) – a service delivered across the province through BC Children’s Hospital – comes to Hampton’s school to train and retrain Hampton’s teacher, the principal, and his education assistant.

But not anymore. Michelle and her husband Chris received a letter from the NSS stating that because Hampton has not needed the rescue intervention in the last 12 months, he no longer meets the criteria to get the training for the adults around him.

And the reason he hasn’t needed Midazolam is because the drug is supposed to be administered at the two-minute mark of a seizure, and Hampton’s seizures in recent months average a minute and a half to one minute and 45 seconds.

“So they’re 15 seconds short of meeting the criteria,” Michelle said.

In a statement issued to the media about Hampton’s case, the Ministry of Health said: “To be eligible for Seizure Rescue Intervention Care Plan, a child must have required a rescue intervention over and above basic seizure first aid to stop their seizures.

“If it has been more than 12 months since a child has needed a seizure rescue intervention (medication), the child will be transitioned off an NSS Seizure Rescue Intervention Care Plan and into a Seizure Action Plan in the school setting.”

The decision makes no sense to the Gaudets who are concerned about the worst happening while Hampton is at school. On more than one occasion in his young life, Hampton has had to be airlifted to a hospital after a serious seizure.

Michelle said that Hampton’s neurologist even recommended an exemption, to no avail.

Now the family is left with a choice: keep Hampton home or risk death with him going to school.

The Gaudets are not alone in this bureacratic black hole. Michelle said she’s been in touch with other parents of children with Sturge-Weber syndrome who also received the letter.

She’s contacted various media outlets in the hope that speaking up will help make a difference for all families in this situation.

“The more people that hear the story, hopefully they will make a change for all the kids.”

READ MORE: B.C. boy at risk of life-threatening seizures ‘discharged’ from rescue-medication program

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