An 8-year-old Evan Prescott was born with an agonizing skin condition called epidermolysis bullosa, called EB for short. The genetic condition is incurable and causes the skin to easily tear and break into blisters. Evan has become the first child in the world to use nitrous oxide, better known as laughing gas, at home to help him deal with his painful treatments of changing his bandages and lancing the blisters. His family says the new treatment with laughing gas has changed his life.
Evan needs to use a wheelchair at school and walks around on his knees most of the time at home to avoid pain.
“It’s easier for me to go around on my knees because… my feet and hands are the most painful because those are the things I mostly use,” he told CTV Montreal.
Evan was diagnosed with EB hours after he was born and spent his first few months in hospitals where nurses had to wrap him in bandages several times a day in order to protect his skin. Once he had went home, Evan’s parents had to take over his medical care, including lancing his blisters twice a day.
“We pop them with a sterile needle that we have a prescription for. We lance them and then we drain them,” his mother, Yandy Macabuag, explains.
The treatments are extremely painful and thus traumatic for everyone involved, says Macabuag.
“He would literally cry and cry and cry before he could communicate with words. It was just tears. As a parent, it’s horrible, because you’re told that you’re doing this to help your child and you feel like this monster who’s attacking them,” Macabuag said, fighting back tears of her own.
The Montreal Children’s Hospital tried several treatments to help Evan handle the pain, from distraction techniques to anesthetic creams, even opioids, but nothing worked.
The director of the hospital’s Chronic Pain Service, Dr. Pablo Ingelmo, didn’t want to give up looking for a solution, saying it “unacceptable” to allow Evan to endure such pain.
“You see suffering in the face of the kid who cannot walk, and you see the suffering in the face of the mother that has to inflict pain,” he said.
The family wanted something for his pain that would be fast-acting but also would wear off quickly and leave no lingering side effects. Dr. Ingelmo assembled a team and proposed a new take on an old-fashioned treatment: laughing gas.
Nitrous oxide has been used as a pain reliever in dentistry since the mid-1800s, and though local anesthetics have reduced its use, paramedics and dentists still rely on it. Dr. Ingelmo says it’s still widely used on sick children in his native Italy.
Evan’s family was trained by Dr. Ingelmo to administer the gas from home using a tank filled with 50 per cent oxygen and 50 per cent nitrous oxide, which limits the amount of gas Evan can inhale.
Evan scared of the mask at first and took a while to accept it but his family says it has now become a life-changer. Evan is more relaxed during his skin-care treatments and his overall anxiety has dropped while his confidence has grown.
The family hopes that the chronic pain research underway at the Children’s Hospital will open up the same possibilities for other sick children as well.
BABY JOHN IS DYING WITH EB
The worst disease you have never seen is EB. Due to a genetic mutation, his skin blisters off causing severe pain, bleeding and infections. The slightest friction causes blisters. His right toes have fused together and he lives trapped in bandages, unable to walk at 18 months old. Will you please consider a small $5 tax-deductible donation to his fundraiser to help Baby John’s painful blisters and skin loss? Your donation immediately helps because it buys special bandages plus ointments, and funds research for an EB cure. We have to find a cure to save him! Our medical experts are working hard. We are praying to save ALL babies in terrible pain with EB.
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