A schoolboy who was diagnosed with a mysterious allergic disorder which causes mould to grow in his lungs is pinning his hopes on a new drug trial as medics search for a treatment that will finally relieve his chronic asthma attacks.
Emma Irvine said her eight-year-old son, Max, has so far baffled doctors by failing to respond to a cocktail of drugs including steroids and inhalers designed to control his symptoms.
Earlier this year he was diagnosed with allergic brochopulmonary aspergillosis (ABPA).
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Ms Irvine, a receptionist from Paisley in Renfrewshire, said: "When Max was born he was in the hospital a lot, but they put it down to bronchiolitis [a common chest infection that affects babies] because they couldn't diagnose him with asthma until he was two.
"For his full life he's always been on inhalers, but recently I felt as if he wasn't really getting better.
"We were taking him to the hospital all the time and the doctor was trying all sorts of different things with the dosages of the inhalers, but nothing seemed to be working.
"Then last year, he had about 15 asthma attacks. We were having to be kept in hospital, and he was referred to a specialist.
"She was really good, but then they did a chest X-ray - this was in February this year - and that's when they found the aspergillus, the mould, in his lungs."
Aspergillus are fungal spores naturally present in the environment, particularly in soil.
They are commonly found in the sputum of healthy individuals but can cause more serious complications in people with compromised immune systems.
Doctors are unsure exactly how Max was initially exposed to it, but they believe the mould has been growing and spreading in his lungs ever since he was born.
ABPA is more common in people with lung conditions, including uncontrolled asthma and cystic fibrosis.
Early diagnosis and management are critical to prevent disease progression and more serious side effects.
However, in children it tends to be detected much later.
In Max's case, by the time he was diagnosed doctors feared the mould could have spread beyond his lungs to his brain.
If it had, it would have been fatal.
"If it had spread to his brain he would have had a five year life expectancy," said Ms Irvine, 30.
"Thankfully, they managed to get it on time, but because it's gone untreated for eight years it's quite bad.
"He's on steroids to try to reduce that, but he's allergic to everything basically and one of his allergies is the aspergillus mould.
"So when he's having a reaction to anything, that's what's kicking off the asthma attacks."
Overall, ABPA is estimated to affect around 15% cystic fibrosis patients and 2.5% of adults with asthma.
Some studies have suggested that the prevalence of ABPA in children with asthma is around 10-20%, but it is mostly undiagnosed.
As a result, it is one of the most common causes of poorly controlled asthma in youngsters.
In two weeks' time, Max will begin a drug trial run by clinicians at Glasgow University and the Queen Elizabeth University Hospital where he will be tested on two monoclonal antibody drugs - Omalizumab and Mepolizumab - which will be administered in the form of regular injections.
Omalizumab is currently available on the NHS as an add-on treatment for children aged six and older whose asthma symptoms are not well-controlled by corticosteroid inhalers.
It is not currently funded for use against ABPA, but clinical trials in adults have previously found that it was effective at reducing the frequency and severity of asthma attacks.
Mepolizumab is also available on the NHS as an asthma medicine, but is still considered experimental as a treatment for paediatric ABPA.
Although there is no cure to clear the mould from his lungs, researchers hope that one of these drugs will finally control the asthma attacks which put Max at high risk of hospital admission.
Ms Irvine said: "He's highly allergic to dust mites, so I need to hoover his mattress three times a week and change his bedding twice a week.
"When he's having the attacks, he can't breathe.
"I've got an oxygen tank in my house so he's on that every night. He's on asthma tablets, purple inhaler, blue inhaler, and steroids every single day.
"All the doctors are at a loss because they can't understand why he's still having attacks when he's on so much medication.
"They've put him forward for this clinical trial to test out the two different types of medication to see which one will work.
"The only thing about it is that the medicine that they're going to try isn't tested on a lots of kids, so they don't know what the side effects of it are going to be.
"They have said to me that they can either make him a lot better, or they can make him a lot worse.
"It's a trial - we won't know what happens until they start it."
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However, Ms Irvine said that she hopes the study will finally be the breakthrough to give Max - a keen amateur swimmer and footballer - a more normal life.
She added: "He's always going to have asthma, for the rest of his life, but hopefully one of these drugs controls it a lot better."
Joseph Carter, head of the charity Asthma + Lung UK Scotland - which has been supporting the family - said: “As with many lung conditions, getting the right diagnosis can be hard but we are delighted that Max finally got the treatment he needs and we wish him all the best.
"The new drug trial from Glasgow University and Queen Elizabeth University Hospital sounds very promising and hopefully that will ensure Max will be able to continue enjoying all his sport and activities.
“Funding for research into respiratory conditions remains painfully low yet one in five Scots will develop a lung condition in their lifetimes."
Asthma + Lung UK Scotland offer a free advice helpline on 0300 222 5800, and can also be contacted via email on helpline@asthmaandlung.org.uk.
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