A Methven family has had their lives turned upside down by a case of severe eczema, which has seen a little boy hospitalised and his parents desperate for effective treatment.

Three-year-old Otavio Bernes has suffered from food allergies and angry rashes, that were treated as eczema, since he was a young baby.

His parents Franciele Fernandes-Bernes and Gilberto Bernes have sought help from several doctors around Canterbury, who've put the cause down to both environmental and food allergies.

Otavio has been on steroid cream which did ease the symptoms, but mum Franciele said when they reduced the dose he reacted severely.

She believes the cream was being overused and weaning his body off it caused the extreme flare-up.

"It's called topical steroid withdrawal syndrome."

The boy ended up in Christchurch hospital for five days, earlier this year.

Otavio's parents are at their wit's end and the impact on all of their lives has been huge, mentally, emotionally and financially.

Franciele had to stop working for six weeks when Otavio's condition was at its worst. She and her husband own the Green Parrot Bar and Grill in Methven.

"It was full-time caring for Otavio. There were endless nights of him crying and none of us sleeping. We were living life like zombies."

Life is based around cooking and cleaning.

At the lowest point, the washing machine was going constantly, washing Otavio's clothes and bedding.

"Because of blood and dead skin and ooze from his skin."

The Fernando-Bernes' had to buy a $600 robot vacuum cleaner with a special high efficiency particulate air (hepa) filter to suck up allergens.

The cleaning regimen is not the daily deep clean that it once was, but it is still a twice-weekly occurrence.

Thankfully, the family has help at hand.

"We have had wonderful support from friends and our church."

The house has to be aired everyday, they have to use non-chemical cleaners, there are no fragranced soaps or shampoos in the house, and laundry is dried inside.

"We can't expose it to any dust or pollen."

A lot of the pleasure has been taken out of food. It is prepared with Otavio's health in mind, and it it very time consuming.

If the family are invited out for lunch, they have to think twice because of the very limited food choices available for Otavio.

"We're afraid of giving him anything that we don't know what is in it.. This has affected us going to things like birthday parties. It's really had a social impact on us."

Right now the boy is in a good phase and living, what his mother describes as, a normal life. He is able to attend Leap Ahead early childhood centre in Methven, "the staff have been wonderful."

But she believes that could change at any time.

In recent weeks, a topical immunosuppressant and moisturiser has to be applied all over the child's body and costs $200 a week.

Hope for treatment

Searching for answers and treatments, at one point, turned into an almost full-time occupation for Fernandes-Bernes.

"You are online all the time, joining groups and trying to find help."

She came across the story of Hawke's Bay boy Luke Sinclair whose mother, Leah Bray, sought treatment in the US for her son who was suffering from topical steroid withdrawal syndrome (TSW).

Fernandes-Bernes said he was treated by Dr Xiu-Min Li, a professor and researcher at New York Medical College who treats eczema and TSW sufferers as well as allergies with traditional Chinese medicine.

Luke's treatment was for 19 months

"He is now a year post treatment with no skin regime, no medications, zero eczema and perfect skin."

The Fernandes-Bernes' are starting the treatment for Otavio, which will be shipped over and also includes video meetings with the doctor on a regular basis.

"Those will be at around 3am our time."

The mother expects the regime to last for at least 18 months, costing around $1500 a month.

They have set up a givealittle page, aiming to raise $30-40,000.

So far, nearly $3000 has been raised at www.givealittle.co.nz/cause/our-boy-deserves-to-live-like-a-normal-child

By Julie Moffett