'One bite of a panini changed my son's life forever'- Mum of Cormac (9) on his life-threatening peanut allergy
Published 28/06/2016 | 02:30
It's strange how one bite of a sandwich can change the direction of a child's life forever. On a sunny September morning in 2009, as we sat innocently drinking coffee and eating paninis, we discovered that our then two-year-old son Cormac had a life-threatening food allergy.
Within minutes of biting the sesame-covered panini, he became very agitated and started clawing at his throat. When he couldn't be consoled, we headed home - by which time his eyes, ears and lips had puffed up and his torso was developing an all-over rash. Still in the dark as to what had just happened, we set off for the local surgery where an allergic reaction was confirmed.
By this time, Cormac had developed hives the size of saucers on his legs (urticaria) and was dispatched to A&E. This, it transpired, is one of the many stages of anaphylaxis - an allergic reaction which can vary in its manifestations, from a rash at best to a closing of the airways at worst.
Fortunately, on this occasion, Cormac's chest was not affected - which was miraculous, given that he is also asthmatic. Following blood tests, further bad news was to follow. Along with sesame seeds, Cormac was also allergic to the dreaded peanut.
We subsequently discovered that a peanut or sesame allergy is a reaction that occurs when your body mistakenly identifies peanuts as a harmful substance. When you eat peanuts or food containing peanuts, your immune system, which normally fights infections and diseases, overreacts and can cause a serious, even life-threatening response. The allergic reaction which occurs releases chemicals, including histamine, into your blood. These chemicals can affect different tissues in the body, such as the skin, eyes, nose, airways, intestinal tract, lungs, and blood vessels. It's not clear why peanuts trigger this response in some people, but it seems to be more common in children with a history of asthma or eczema.
We have asthma on both sides of Cormac's family, so chances are his condition is genetic.
Our lifestyle as a family had to change overnight. We were trained to use and carry an epinephrine pen (an injector pen that contains adrenaline) as well as antihistamine every time we eat out. Restaurants have become a game of Russian roulette: will I trust the staff member when they say there are no nuts or sesame in the dish? Recent EU allergen legislation has made it easier for Cormac to enjoy a trip to a restaurant, but a momentary lapse of concentration in a busy kitchen could still cost him dearly.
I often think of a young Dublin girl called Emma Sloan who died on O'Connell Street in 2013 after inadvertently eating satay sauce, and who was then refused an EpiPen without prescription from a nearby pharmacy. Her unnecessary death fills me with fear. I know how vulnerable you feel when away from home. When travelling anywhere, I automatically make a note of the proximity of the nearest hospital 'just in case'.
Cormac's school has his medical bag on standby and teachers have been trained to use it. His picture is on the staffroom wall along with others in the 'allergy gallery'. He brings his medicine to birthday parties, but can never tuck into party food like his pals. The phone is on standby in case the party host needs to get us quickly.
Every new item in a supermarket has to be nut/sesame checked and given that most labels now say 'may contain nuts' as a form of legal protection, choices are pretty limited. On aeroplane flights, a nut 'buffer zone' is made around his seat and clearance letters need to be provided for airport security checks for his pen and liquid medicine.
While Cormac accepts his lot, he is sometimes overwhelmed and reduced to tears by the restrictive nature of the condition. Like most children his age, he doesn't want to stand out from the crowd or be labelled. About 20pc of children outgrow this allergy, but five years on, his sensitivity shows no sign of abating. To monitor any progression in his allergy, in 2015, Cormac was offered a 'food challenge' under supervision in a Dublin paediatric hospital.
After swallowing a minuscule amount of peanut butter, it took just 30 seconds for a reaction to start and he was immediately administered antihistamine. His throat started stinging and his eyes became bloodshot, and despite being medicated so quickly, three hours later he was vomiting and cramping as this morsel made its way through his stomach and gut.
Cormac found this experience stressful and has built up a lot of anxiety around eating unknown products.
In the greater scheme of life, we know that there are far more serious conditions that a child may have, but our biggest fear is for a time when we won't be around to monitor him and he possibly makes the wrong judgment call on food - for example, a late night sesame burger bun or something fried in nut oil. Mistakes still happen: relatives forget; parents send nut/sesame products into school in lunch boxes and I myself once gave him hummus without realising that tahini oil was made from sesame seeds.
Our breakthrough came in 2014 when an article was published regarding successful oral immunotherapy (or desensitisation) treatment for children aged seven to 16 with peanut allergies in Britain.
Clinical trials had been carried out and published in the Lancet Medical Journal by a medical team in Addenbrooke's Hospital in Cambridge. It was discovered that by introducing small amounts of peanut protein in powder form to patients over a period of time, almost 85pc of participants had become desensitised to peanut and therefore could avoid the serious risk of anaphylaxis if they ate something accidentally.
The treatment was only to be carried out in a highly supervised and controlled setting because of the element of risk.
I was very excited about these successful trials and eventually Cormac was assessed for suitability this May and offered a place on the immunotherapy programme under the supervision of Dr Andrew Clarke of the Cambridge Peanut Allergy Clinic in the hospital. However, the two-year programme costs nearly €19,000, and having tried to get support for funding, it transpires that we are prevented from applying for financial assistance under the HSE/EU Treatment Abroad Scheme (E112) as it is being carried out in a 'private clinic' in the hospital.
Frustratingly, we have also researched the HSE Cross-Border Healthcare Directive (CBD), which enforces a patient's right under EU law (Directive 201/24/EU) to seek healthcare abroad, to find that Cormac does not qualify for this as the treatment is not currently offered in a 'public' hospital in Ireland. It, therefore, cannot be costed for reimbursement.
It seems we are caught between two funding systems, the criteria of which are so specific that neither serve the health needs of this little boy, whose parents are more than prepared to travel back and forth for two years to another country to get him the potentially life-saving protection he will need for the future.
Health & Living