My child has allergies. Now what?
Allergies, anxiety and anaphylaxis
When Emma Amoscato was a new mum - her baby boy was distressed.
He developed severe eczema, would vomit his feeds and slept badly.
“You just knew there was something up, but trying to get the doctors to pay attention, to take it seriously or to get the support we needed was really difficult,” she told me in healthHackers® episode 33.
She went to her GP weekly, “sometimes daily,” telling them that the creams she’d been given were not working.
“It’s incredibly stressful and upsetting.
“All you want to do is help your baby. You're seeing other babies that just lie there and are happy.”
Feeling unheard and desperate for answers, Emma switched surgeries to see a different GP.
“The minute he saw James, he said: ‘I can't believe they’ve let it get to this stage - I'm sending you to A&E.’”
In hospital, a dermatology consultant assured her that his symptoms were not being caused by food allergies through Emma’s breastmilk.
However, on introducing solids to his diet later, it became clear James was indeed reacting to foods - and he was referred to an allergist.
Knowing what allergies to test James for came largely down to Emma’s detective work. She’d already spotted reactions to dairy.
“His first big reaction during weaning was to hummus, so we pretty much knew it was sesame. He licked a tiny amount and he just started vomiting. He had hives all over him and he'd also had a contact reaction to walnuts,” she told me.
After testing positive for allergies to milk, egg, tree nuts, peanuts, garlic, sesames, cod, grass pollen and dogs - and consequently avoiding those things - James’ eczema disappeared.
According to Emma, fighting to get a diagnosis isn’t uncommon among parents of allergic children.
It’s one of the issues she discusses in her book, ‘Living With Allergies,’ along with other key stages involved in adapting to a new way of life once you discover your child has allergies.
As a journalist, Emma had started blogging about her experiences with James, and even though she spent a lot of time scouring the internet for information, she hadn’t been able to find a guide that covered all the basics of allergic living, so she decided to write one.
“I just really wanted this book or something like it to give me that kind of grounding and understanding of it,” she told me.
Two years after James was born, Emma had her second child, Amalia, who also showed signs of allergies.
Again, Emma found herself fighting for an allergy referral.
Through a lot of research and hard work, Emma, her husband and two children have found ways of making life with allergies run as smoothly as possible.
In healthHackers® episode 33, we discussed one of the biggest issues that anyone living with allergies (myself included) doesn’t enjoy - allergy anxiety.
Speaking personally, as someone with a nut allergy, if you know your reactions can be anaphylactic i.e. life-threatening, it’s pretty hard not to fear the worst.
And it seems severe reactions are becoming more common. Emma cites research in her book outlining that “seven times as many people were admitted to hospital with severe allergic reactions in Europe in 2015 than in 2005.”
Emma, understandably, found James’ first anaphylactic experience - at the age of 15 months - terrifying.
“He got hold of another child's milk bottle, he had a sip. We were actually away with some friends and my husband rushed him upstairs…you could hear his airways were closing up.”
They used his adrenaline auto-injector before the ambulance came.
Since then, Emma has developed her own coping skills and offered this advice to parents:
“The first thing is to remind yourself that it’s very, very rare to die from an anaphylactic reaction.
“When you read those stories, and you hear the tragic losses - it feels so real and so close.
"Sometimes you have to limit your intake a little bit. That's not to say you have to avoid those stories but you can get yourself in so many Facebook groups... where the barrage of information and barrage of stories… can feel overwhelming.
“I took myself off a lot of groups because it was just too much, it was just making me more anxious rather than less anxious.
“And then I think you have to know that your feelings are perfectly normal, you're not going crazy.”
“For me it's about being able to take back some of the control because that's where the fear mainly comes from, is that lack of control especially when you're putting your child in someone else's care.
“It’s about arming myself with knowledge, knowing that I know how to read ingredients, how to talk to other people about it, what I would do if there was an anaphylactic reaction, understanding the medication - all that kind of stuff and then having plans and steps in place.”
A bit of self-care and compassion is important too, she told me.
“You've got to give yourself a little bit of a break and understand that sometimes those thoughts are going to creep in and you've got to have your own way of managing them.
Helping your children to understand
Emma helps James and Amalia to understand their allergies by making it “as normal as possible for them so it's just part of everyday conversation,” she told me.
“One of the things with kids is they often don't know what their allergens look like because they've never come into contact with them.”
To help this, she used toy kitchen games.
“They'll make me a cake and I'll say: ‘Oh, has that got egg in it?” and they're like: ‘Oh yeah we can't have that’,” she said.
She also made sure they know how to use their adrenaline auto-injectors.
“My three-year-old showed her nursery teachers how to use one.
“My son is still a bit scared of it, not because he remembers having it… but I think just, you know, we’ve obviously told them there's a needle in it.
“You just have to keep talking about it… and make them confident with it. You don't want them to ever think it's something they have to hide or be embarrassed by.
“Often, if people ask me about their allergies, I'll get them to answer so that they're kind of used to talking about it.”
Adrenaline auto-injector fear
Emma has noticed there’s an unhelpful fear around using adrenaline auto-injectors - which could be to do with the lack of information and support given at the time of being issued with them.
“Unfortunately there's so much research and so many stories of people that haven't used it or have delayed using it."
She recommends practising with an old one on an orange, or using official practise injectors.
“It's such an amazing tool. It's really easy to use and in the majority of cases it works really quickly.
“When we gave it to James it worked so quickly, literally within a minute you could see his breathing easing.”
While there are no cures for allergies, there are cases where the severity of reactions have been reduced after immunotherapy treatment - something you can hear more about in healthHackers® episode 33.
There’s also a chance your baby could grow out of some of his or her allergies, as Emma outlined in her book after interviewing leading experts.
“If you've got an egg or milk allergy - which are much more common in an infant, they reckon about 80% of children will grow out of them by school age.
“With other allergies, like nuts or shellfish, it's pretty much the opposite. There's about an 80% chance you won't grow out of it,” she told me.
Wonderfully for James, he outgrew his anaphylactic milk allergy.
Emma and her family continue to stay positive and adopt a proactive approach to allergic living. Despite the challenges, she says they still do everything any other family does - albeit with a few amendments.
As Emma puts it: “Allergies don’t need to stop you living a fun and full life. They just sometimes mean you need to do things a bit differently.”
Check out ‘Living With Allergies’.
She also runs a Facebook group where you can connect with other people living with allergies in a supportive environment.
Watch episode 33 with Emma Amoscato to hear what you can do to help prevent your baby from developing allergies, practical tips for starting nursery or school, advice for travelling and eating out, plus how immunotherapy could help reduce the severity of reactions.