Leah Bray with her son Luke Sinclair who suffers from Topical Withdrawal Syndrome
The parents of a Havelock North boy suffering inside his skin from withdrawal symptoms caused by the overuse of steroid creams have been inundated with offers of help.
Hawke's Bay Today on Monday revealed the plight of 4-year-old Luke Sinclair, whose "itch fits" can leave him bed- or couch-ridden forhours on end.
Luke's condition, Topical Steroid Withdrawal Syndrome [TSW], caused by overuse of topical steroids, was diagnosed by a paediatric registrar as a secondary diagnosis, and off-the-record by their GP when his pain was at its greatest.
Since Monday, his mother Leah Bray said the light at the end of the tunnel had started to inch closer. But they say while they are willing to try anything which is not steroids, or pharmaceutical medications, time is the main component for Luke's recovery.
On Monday Luke had an appointment with a dermatologist in Hawke's Bay where he had an "itch fit", which can have him cry and scream in pain for hours on end.
"He has been approved for UVB light therapy [phototherapy], which hopefully there is not a waiting list for and can start promptly," Bray said.
"It will be three sessions per week with only a few seconds for the first times to see how he responds and to avoid negative effects."
Luke Sinclair's "itch fits" can leave him bed- or couch-ridden for hours on end. Photo / Paul Taylor
Since then the family have received more than a dozen friendly suggestions and offers of help from "well-meaning" members of the public, in a bid to relieve some of the pain felt by the nearly-five-year-old and the family.
"Lots of people have been in touch who are suffering from the same condition, someone offered us supplements to try," Bray said.
"Someone suggested we cut out gluten, change his diet, get a water filter. I know people mean well but we are way past that point now."
Bray, who is caring for Luke full-time, said the family had spent nearly $10,000 on palliative care for Luke in the past year alone.
"The biggest healer for TSW is time," Bray said.
"People, especially children, do recover from this condition. It just has an individual timeline. Luke has just entered the ninth month steroid-free.
"What we have learned through TSW is that the body and its systems are already in complete shock and disarray, trying desperately to figure out how to regulate on their own.
"If too many things are thrown at a system like this at once, it can have a backlash.
"As we move forward, it's reasonable to try one to two things at a time for a few months, then move on if no results are seen."
The family had a woman "generously" offer to send them some gut-healing supplements (collagen-based) which they started trialling on Tuesday.
"I have just harvested some kawakawa which we plan to trial as a tea for internal detox," she said.
The family would also like to have their carpets professionally cleaned due to Luke's dust allergy, but it is not financially feasible at the moment.
"We will be welcoming a new wee family member in five months' time, so saving a little extra is important."
Luke holding his favourite hemp balm which helps ease his itchy skin. Photo / Supplied
THE BACKGROUND AND WHAT HAS THE FAMILY TRIED TO DATE
Luke, now 4 years and 9 months old, was diagnosed with eczema a few months after a "non-descriptive rash" appeared at age 15 months.
The very first thing the family did was apply topical steroids to the rash.
At the time he was prescribed hydrocortisone cream and the family were told to use the cream when the rash was present.
At age 2, he was prescribed Elocon ointment [a Class 2 Potent steroid], as hydrocortisone had become ineffective, and again told to use it when the rash was present.
"While using steroids, the first alternative treatment we tried was a nutritionist," Bray said.
"We had Luke's hair analysed and eliminated foods based on those results (dairy, gluten and limited a few others) for the recommended time with no results. He also took some type of recommended supplement.
"We took Luke to an immunologist in Auckland when he was 2, who, in addition to prescribing steroids (with coal tar base) also did a blood allergy test."
The test showed some predispositions but based on clinical findings his only true allergy was found to be dust.
"He was also skin prick tested for (only) cow's milk and was negative."
In August 2019, after an "intense" five-week, twice-daily application of Betametasone cream (another Class 2 steroid), the family were told by a paediatric dermatologist the daily use of topical steroids was dangerous, and they needed to taper down to two applications per week, she said.
"When we tried this regimen of twice-weekly application, all hell broke loose and Luke began to experience a host of completely new, debilitating and life-changing symptoms."
While using steroids, age 16 months to 4 years, the family tried dust mite covers for all beds and pillows, 30+ natural creams, lotions, oils, etc, six different probiotics/gut supplements, chlorine-free water (for bathing and drinking), additives to baths, coloured light therapy (different than UVB therapy).
Currently they use the above as well as whole-plant hemp balm to alleviate his "itch" fits, and the aid of a Child Psychologist through NASC.
