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Child volunteers wanted for drug trial to save healthy tonsils from extraction

Most children undergo surgery for tonsils that are too big for them. A nasal spray under trial may provide a circuit breaker.

Most children undergo surgery for tonsils that are too big for them. A nasal spray under trial may provide a circuit breaker. Photo: Getty

An anti-inflammatory nasal spray is being trialled by Victorian researchers on small children with breathing and sleeping difficulties, with the hope it might cut the numbers of tonsillectomies being performed.

The surgery carries risks of bleeding, the recovery is often painful and the loss of the small organs – along with adenoids, a part of the lymphatic system – is somewhat regrettable.

Every year 40,000 people, mostly children, have their tonsils removed, mainly because of breathing and sleeping difficulties.

Most common elective childhood operation in Australia

In most cases, the tonsils aren’t inflamed by infection, simply big. If there was a circuit-breaker that allowed children to grow into their too-big tonsils, they wouldn’t have to lose them.

The nasal spray, being trialled by the Murdoch Children’s Research Institute, may be that circuit breaker.

Parisia and Gregory Cutts both lost their tonsils years ago. Now younger sister Rafaela, who took part in the drug trial, may be spared the scalpel. Photo: supplied

Lead researcher Dr Kirsten Perrett told The New Daily the trial was targeting children who snored or had breathing difficulties, rather than children with recurrent infections.

“They’re the ones being referred to the hospital system to see a sleep physician or an ear, nose and throat specialist to be assessed for possible surgery,” she said.

“There is a huge bottleneck of these children with waiting times of up to a year to see a specialist in the public system.”

She said such children ended up tired from poor sleep and difficulties with concentration and behaviour. The breathing difficulties impacted negatively on cognitive function and cardiovascular health.

“The beauty of this trial is it’s pragmatic,” she said. “Children are enrolled on the basis of history and trialled for six weeks. If it works, it will allow GPs to treat children medically.”

Some children given a placebo

The trial is being conducted as a double blind randomised controlled trial – where neither the researchers or parents know if the child is given the pharmaceutically active spray or a placebo. And they won’t know until the trial is complete.

In total, the researchers want to enlist 300 children. About 70 have so far participated.

One of them is five-year-old Rafaela Cutts. Rafaela suffered with chronic snoring, coughing and breathing problems.

Her mother, Xenia Tsongas-Cutts, told The New Daily that Rafaela had been on a waiting list to see a specialist when she was invited to join the trial.

Some positive results

“We don’t know if we got the placebo or the medication,” she said.

“Whatever it was, we used it for six months and we saw a reduction in snoring straight away. And there was no coughing. And she no longer had episodes where she’d stop breathing. So it’s been quite positive.”

Ms Tsongas-Cutts has older children, both of whom had their tonsils removed.

Older daughter Parisia, now 13, was probably destined to lose her tonsils eventually because she had recurrent infections. She was six when she had the surgery.

“The recovery after was quite long and painful. And she missed school, which was a bit hard because they like the routine,” Ms Tsongas-Cutts said.

Son Gregory, now 10, lost his tonsils before he turned three.

He had sleep apnoea (choking while sleeping) and it was so bad “his oxygen levels were dropping”.

She said his tonsils weren’t inflamed; they were just too big for him.

For Rafaela, who knows? When her participation in the trial was completed, and was deemed a positive adventure, she was given a prescription for the spray.

She continues to use it each night, and her symptoms remain abated.

The researchers are calling for more volunteers.

To enrol, the child must have a referral for snoring from their GP to the Royal Children’s Hospital, Monash Children’s Hospital or the Royal Victorian Eye and Ear Hospital. If you are interested in being a part of the trial you can register online.

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