A family are desperate to escape a seemingly endless treatment cycle and find a cure for their son, who suffers from a skin condition that leaves his body feeling “like it’s on fire”.
Otávio Bernes, 3, from Methven, would lie awake at night moaning in pain, his skin covered in eczema rashes made worse by the overuse of steroid creams.
He now suffers from Topical Steroid Withdrawal Syndrome (TSWS), with his body too reliant on medication.
“We had to go back to [the steroids] because we couldn’t keep living the way we were,” his mother, Franciele Fernandes-Bernes, told the Herald on Sunday.
“It’s not just what you see on the skin, but your mental health and all the sleepless nights, you just can’t take it any more.”
Otávio has serious allergy sensitivity. He can’t bath or swim and wears long-sleeved clothing in summer to avoid putting sunscreen on his sensitive skin.
Attending a birthday party is a mission, as Fernandes-Bernes needs to communicate his dietary boundaries firmly to hosts.
Her son’s mood has recently changed to reflect his turbulent childhood.
“He’s been way more aggressive than normal because he’s been through really bad trauma.”
It started with a simple rash under Otávio’s jaw when he was less than a year old. Doctors called it a dribbling rash and provided a steroid cream.
Then various rashes appeared on his body and more cream was applied. His older sister Laura suffers from mild eczema.
Fernandes-Bernes said she was never informed about the side-effects of withdrawal from creams she’d given her son.
“The doctors only said he would grow out of it.”
Each time the steroid dosage was reduced, Otávio’s body would flare up in patches, to the extent that in May this year his face flushed red and his eyes swelled.
His mother assumed it was sunburn, but her research into eczema revealed the truth of abusive steroid application and withdrawal symptoms.
“So I said I will stop putting on steroids – I’m done,” she said.
She expected Otávio’s condition might worsen, but nothing prepared her for the skin outbreak that hospitalised him in Christchurch on July 21.
“It was endless nights of no sleep at all, he was itchy all day and all night, itching his body the whole night. He couldn’t handle the medicine any more ... then he’d have that swelling and the oozing [on his skin] was getting worse.”
According to Fernandes-Bernes, adults who experienced what her son endured had described the feeling as “burning pain and stinging on the skin”.
“You can’t even talk about it [with Otávio] because they’re just a child,” she said.
The conversations at hospital were as expected, with staff wanting Otávio to go back on to the steroid creams – the very treatment from which his body was suffering withdrawal.
Fernandes-Bernes couldn’t see an alternative.
Topical Steroid Withdrawal Syndrome is also known as “burning skin syndrome” due to the condition’s painful effect.
Eczema Association of New Zealand (EANZ) representative Vanessa Jenkins said the condition wasn’t accepted medically until recently.
“It’s not new, but there’s lots more research coming out now and they’re starting to understand the different phases the skin goes through.
“Steroid creams do need to be used correctly. You do come across people who need it daily but it’s the absence of having it on the skin that can cause it to go into shock.”
Otávio is now taking oral steroids. A full dose will see his skin clear up within days, but any drop in quantity brings the itchy patches back again.
“[The steroid] says to take a full dose for a week, then half the next, then a quarter the next, but we’ve never managed to wean him off,” his mother said.
“Even on the full dose it’s worse than before ... his body is getting used to it and now requesting more to get it under control.”
The worn-out parents have tried every method under the sun – an elimination diet, oils, moisturisers and treating his gut. For a while, they went chemical and fragrance-free, used cotton clothing and bedding and air purifiers.
Nothing seems to have helped. The regimens and supplements have cost up to four times more than the average family would spend on groceries.
The family will now turn to Chinese medicinal alternatives, which will require Otávio to undergo an intricate bathing and medicine plan.
Other recovery pathways are being considered and government support isn’t off the table.
“We’re trying to get funding for treatment under exceptional circumstances. We hope our dermatologist will help with the application to say what’s available here isn’t working.”
A doctor in New York was recommended to the family after curing a similar condition in a 7-year-old Hawke’s Bay boy, but procedures could cost up to $40,000.
Almost $4000 has been raised through a Givealittle page set up in August and an additional $5000 from another donation page in their native Brazil.
One generous person has donated $10,000 towards Otávio’s recovery.
“He went back to preschool five weeks ago, he’s sleeping through the night much more now,” said Fernandes-Bernes.
“Despite the medications, he’s still living his best life. It’s much closer to normal.”
Jenkins said people suffering from eczema needed to be careful heading into summer, which is promising hot and dry El Niño conditions for most of the country.
Eczema sufferers could find their skin flare up from sweat, or exposure to the sun or wind.
“There’s lots of approved sunscreens now for patients with eczema,” she said.
“Going into the ocean normally isn’t an option for them, so having a paddling pool is good for keeping the body cool. I usually default to showers or baths – and air conditioning is always a good option.”
Her carers said the socks were to stop the woman from chewing on her hands.