His little hands are covered in soft gloves, taped to his wrists to stop him from scratching his face and body
He tosses and turns in bed, tears rolling down his cheeks, his screams piercing the night.
He's itchy, irritable, and covered in eczema.
This was Luke Sinclair's toddler life. It was unbearable.
"He had these fits," said his mother Leah Bray, who would video her young son to keep a diary of his agony for specialists. "He went nuts, he was in incredible pain, he was so young, he just lost it."
Luke developed eczema at 15 months old. Back then, a doctor prescribed hydrocortisone cream. It didn't work.
"We began sleeping with him to hold down his arms to stop him scratching too much," his mum said.
The eczema spread and doctors would prescribe stronger creams to apply more frequently.
Restrictive diets were tried and homeopaths engaged, but to no avail.
"When he was three, he told a man, unprompted, he said, 'You have nice skin, I have bad skin, I hate my skin'. He was three."
On doctor's orders, they kept applying the steroid cream, day and night, hoping it would eventually help.
"Since we didn't know there was a danger of overuse, we used it freely. Our prescription labels said use two days or once a day until the rash cleared."
But the rash never cleared. A pediatrician then prescribed another cream to apply for five weeks. By then, Luke's parents had read about topical steroid withdrawal and, concerned, they asked about it.
"She said absolutely no concerns, not to worry about it and please use the cream as we were instructed, so we did."
But at the end of the five weeks, a new pediatric dermatologist dropped "a bombshell".
"She told us that daily use of steroids was unsafe."
So, they cut back but Luke suffered terribly from steroid withdrawal. He was in agony and admitted to hospital where he was heavily medicated.
"It was so far beyond any level of pain and itch. It's completely indescribable. He looked like he had third-degree burns."
They were told to apply more topical steroids and prescribed a low-dose medication given to cancer patients. They fought it but felt alone and ignored.
Mentally the toll was devastating. Leah left her job to look after Luke full-time and Luke was enrolled in therapy.
"I remember the psychologist saying he's too sick for trauma therapy, he's too traumatised for trauma therapy."
By now they were terrified they would lose their boy and withdrew him from care.
But then a friend told her about an eczema specialist in New York, Professor Xiu-Min Li, a doctor who offers both Western and Chinese medicine.
She agreed to take on Luke and prescribed her own medicine, creams, and procedures. It was intense but worked almost instantly.
"It was like a breath of fresh air. Our lives were handed back to us on a silver platter in weeks," said Leah. "Here we are almost a year later, no creams, no baths, no pills, no nothing. And he doesn't have a blemish on his entire body, just freckles."
The treatment wasn't cheap, costing thousands of dollars. But Luke's family did eventually secure health funding.
But they are worried about the treatment they received in New Zealand and have now laid a complaint with the Health and Disability Commissioner. They want safer prescribing guidelines for topical steroid use.
Newshub put this to Dr Louise Reiche, a top specialist dermatologist. She knows her eczema.
"Eczema can affect up to a third of the population at some stage in New Zealand - and the best treatment for inflamed skin is topical steroid," she told Newshub.
She said when the cream doesn't work, it can often indicate an underlying infection or allergy.
"It's like having your foot trapped on the accelerator and you are trying to use the brake to stop your car. Steroids alone will not clear up eczema that is being fueled by an allergen."
Patch testing is crucial, she said, but this isn't readily available nationwide. She said more funding and more specialists are needed.
As for Luke Sinclair, he's now a happy sports-mad wee boy. Leah has her son back and she hopes to inspire other affected parents that there is help out there for topical steroid withdrawal. Unfortunately, it's often overseas.
