How 'laughing gas' is helping a Montreal 'butterfly boy'
Published Thursday, February 8, 2018 8:52AM EST
Last Updated Thursday, February 8, 2018 8:54AM EST
An 8-year-old boy in Chateauguay, Que., who was born with an agonizing skin condition has become the first child in the world to use nitrous oxide – or laughing gas -- at home to help him with his painful treatments. And his family says the treatment has changed his life.
Evan Prescott has epidermolysis bullosa, the same skin condition that affects “Butterfly Boy” Jonathan Pitre. The genetic condition is incurable and causes skin to easily tear and break into blisters.
Evan’s form of the disease is milder than Pitre’s but he still needs to use a wheelchair at school and to walk around on his knees most of the time at home.
“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 within hours of birth and spent his first months in hospitals where nurses wrapped him in bandages several times a day to protect his skin. But once at home, Evan’s parents had to take over care, including a grueling, twice-daily regimen of lancing his blisters.
“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.
Evan’s medical team at Montreal Children’s Hospital tried several standard treatments to help Evan handle the pain, from distraction techniques to anesthetic creams to opioids, but nothing worked.
Dr. Pablo Ingelmo, the director of the hospital’s Chronic Pain Service, didn’t want to give up looking for a solution, calling it “unacceptable” to allow Evan to endure 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 a painkiller that would be fast-acting but would also 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 mostly reduced its use, paramedics and dentists still rely on the drug. Dr. Ingelmo says it’s also used widely on sick children in his native Italy.
Dr. Ingelmo trained Evan’s family 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.
Though Evan was at first scared of the mask and took a while to accept it, his family says it’s since become a life-changer. Evan is more relaxed during his skin-care sessions and his overall anxiety has dropped while his confidence has grown.
The family now hopes that the chronic pain research underway at the Children's Hospital will open up that same world of possibilities for other sick children as well.
With a report from CTV Montreal’s Cindy Sherwin