Saturday 24 March 2018

'The boys have about 13 'safe' foods they can eat' - Irish mum-of-two on her children's severe allergies

A new Peter Rabbit film has come under fire for a scene that makes light of food allergies. Criticism of the movie has been blasted by some as 'PC gone mad' but mum-of-two Monica O'Gorman from Achill, Co Mayo, knows life with allergies is no laughing matter

Rare condition: Monica O’Gorman with her sons Caolán (4) and Oisín (3) at their home in Dooagh, Achill Island, Co Mayo. Photo: Keith Heneghan
Rare condition: Monica O’Gorman with her sons Caolán (4) and Oisín (3) at their home in Dooagh, Achill Island, Co Mayo. Photo: Keith Heneghan

As parents, my husband Mickey and I are always on our guard - we have to be. It might come across that we're overprotective, but we're doing what's necessary to keep our children safe. If we weren't cautious, our boys risk suffering a severe life-threatening reaction.

Both our sons, Caolán (4) and Oisín (3) suffer from Food Protein Induced Enterocolitis Syndrome (FPIES). It's a very rare, chronic food allergies condition. I think there's probably only around 14 children in Ireland that have it - and two of them are mine.

The boys have about 13 'safe' foods they can eat: potato, courgette, oats, wheat, bananas, sweet potato, peanut, almond, soya, raisins, grapes, turkey and chicken. They react to protein and additives so I'll often spend hours in the supermarket reading ingredients labels and there's a lot of cooking from scratch.

We can't go anywhere on the hop. Birthday parties are a no-go and restaurants are largely out because of cross contamination risks. Even a carton of juice or a few crisps left in a shopping trolley could have us heading for A&E.

Caolán was a baby when we started to notice things weren't as they should be. He developed marks on his skin and his bowel motions weren't as they should have been. When we started weaning, he had massive reactions to everything we tried. We gave him a little bit of avocado - normally a safe 'superfood' - and he began vomiting over and over again. It got so bad he started passing in and out of consciousness and we'd rush to A&E.

But no one knew what was wrong and I often felt fobbed off as an 'over anxious parent'. Eventually when he was 15 months old, we sought out a consultant in London and that was the turning point. We got help, support and a diagnosis - the right medication and intervention. Back home, we were referred to Dr Aideen Byrne, consultant allergist at Crumlin Children's Hospital, and she has been fabulous.

There's a lack of resources and information generally in our country around food allergies, never mind something as rare as FPIES. It makes it a very scary position to be in as a parent. Feeling believed and taken seriously means a lot. I've found great support online, first on the Surviving Reflux Ireland Facebook group and now with other FPIES parents' groups which help you feel less alone.

Our lives have been completely turned around. I had to take leave from my job as a Fundraising Manager for Mayo Roscommon Hospice to be a carer to our sons. I've been off four years now and only went back on 15 hours a week this year. I'm still on carers' leave because of the amount of time that this diagnosis takes up in our day-to-day lives.

We work with a dietician in London and have regular telephone consultations updating her on how we're getting on. She gives us suggestions on foods to try and we do a method called 'food cycling' where we introduce one food at a time in a small amount and very gradually. We're trying apple next so we'll start with half a teaspoon, then leave it a week before another half teaspoon then build up the frequency. You're monitoring all the time for reactions which can take up to 72 hours to happen.

Things to watch for are spots, reflux and loose stools. Their behaviour can be affected, making them cranky and lash out. The more severe reactions involve vomiting followed by severe diarrhoea, then lethargy and loss of consciousness. Caolán is FPIES to cow's milk, avocado, coconut and pork - we've had emergency admissions with each of those foods and it's terrifying to see your child go from fine one minute to lifeless the next. There's no test in the world for FPIES - the diagnosis is made on symptoms and there's very little understood about what causes it. But the positive thing is that the boys hopefully will grow out of it. We've been told by our consultant that Oisín will hopefully be the other side of it by seven or nine. They hope our younger son might see major improvements in the next two years because he was diagnosed sooner.

But we try not to pre-empt anything or look too far ahead. We just take each day as it comes. Last month they were making pancakes in the boys' nursery for pancake day so I was up extra early in the morning to make their special pancakes to bring in so they wouldn't feel left out. You're constantly trying to make sure that they're not excluded. I worry about them. I feel helpless. We try to live as normal a life as we can but the boys live quite a sheltered life too in a way - there's a lot they can't get involved in.

I worry about the boys being bullied or ostracised because of their allergies. I've heard other kids saying 'you can't eat that' and 'you can't have that' or 'you're not allowed that' and it's nearly like a taunt. They're only children and they don't realise that they're doing it, but my heart sinks when I hear it. People who haven't experience of food allergies often don't realise the severity of it. We've felt the disbelief from other adults, reactions that nearly make you feel like you're over-reacting. People's acceptance of hidden disabilities and less understood conditions depends on education. The images we see in the media matter.

That's why I'm disappointed in the new Peter Rabbit film and won't be taking my sons to see it. My boys are already aware they are different from their peers in what they can and cannot eat. In a world where we strive to teach our children right from wrong in all walks of life, it's unacceptable to think children should be shown this kind of behaviour in a movie and all it does is add to the attitude out there amongst some people that food allergies are not a serious issue.

It's difficult enough to get young children to grasp the understanding of why the boys can't eat the same food as them. I'd be distraught to think that any child would think it is acceptable to force a food into our children's mouths that they're not able to have, all because they have seen it in a movie and think it's okay.

In conversation with Chrissie Russell

Irish Independent

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