For years, all Luke could do was sit on the couch wrapped in blankets. His skin was so itchy and painful that he was incapacitated and became a shell of a kid. But, thanks to a much-needed medical intervention and Satan’s Little Helper, he is a child reborn.
When Luke was just four-years-old, he started to come off steroids used to treat his eczema. Little did anyone know, that decision kicked off a ticking time bomb.
“When we took Luke off the steroid cream, his body went into shock,” says his mum Leah. “He developed topical steroid withdrawal. His skin looked like he’d been burned – it was red, cracked, painful, extremely itchy and he was oozing fluids.”
Luke would later be diagnosed as steroid refractory by a paediatric dermatologist, which means the medicine came to harm, instead of help, him. He’d have ‘itch fits’ that would last up to two and a half hours. “He could have up to 10 in a day,” explains Luke’s dad Matt. Any movement or changes in air temperature could set off an itch fit, so Luke developed a habit of sitting stock still on the couch, covered in blankets. It’s no existence for a four-year-old.
Luke had his hands bandaged to reduce the damage he did to himself during his scratching.
“He’d leave his skin a bloody mess without the ‘mittens’. His hands were like that all day for a full year.”
Leah was at the end of her tether. Her little boy was ripping his skin to shreds. He couldn’t move off the couch. He was isolated, in pain and traumatised.
The thing that’s staggering about seven-year-old Luke’s situation is that it feels so preventable. Of course, the doctors didn’t know they would eventually cost Luke two years of his life.
It was only after Leah decided to try non-traditional medicine that things started to get better and the pain started to subside and eventually disappear.
His recovery was almost as dramatic as his decline.
In December 2020 she contacted a specialised immunologist in New York City, who is also an expert in traditional Chinese medicine.
“Dr. Xiu-Min Li put him on a regime that was very intense, but it worked almost instantly.”
A solution to years of pain
Luke would have a herbal bath for 30 minutes in the morning and a bath infused with powder for 30 minutes at night. He had to apply a special cream six times a day, take over 20 pills and drink various teas.
“After three months, his old dermatologist bumped into Luke and his jaw dropped at his progress.”
Traditional Chinese medicine was right for Luke, but Leah is at pains to point out it may not work for everyone.
“I’m not saying that anyone should go against doctor’s orders. We turned to Dr. Li as a last resort, but we do want to raise awareness for anyone who is in the same position.”
Luke’s skin is better but the scars remain.
“He lost a lot of his fine motor control because his hands were bandaged for so long.”
Understandably, Luke has some mental scars, too.
A lot of good can come through play, especially for children like Luke, who’ve missed out on it for so long. So, to facilitate fun, learning, growth and development, Satan’s Little Helper hooked him up with a swing set.
“He loves being outside and the swing set gives him something that he can do on his own (which he could never do when he was sick) or with his brother and friends. He’s also learned new things, building strength, re-gaining his motor skills and challenging himself physically. He’s even learned to hang upside down on his trapeze!
“He also feels normal again, which sounds so simple but it’s so amazing for his mental and physical health. For example, I don’t think he even knew how to use a swing. Imagine a child who doesn’t know how to do that!”
Leah says Luke’s first thought now is coming home and playing – a far cry from when he was so debilitated, he couldn’t even get off the couch.
“I’m only starting to process it, move on and heal. Luke’s experience was traumatic for the whole family but look at him now! His life has been saved.”
Leah says anyone who wants to learn more about topical steroid withdrawal can visit ITSAN.org or watch Preventable, a documentary by Briana Banos.