Yesterday marked the start of Allergy UK’s Allergy Awareness Week 2017.
Mother Sider Lindsay is a real inspiration to us, and to all parents dealing with the ignorance surrounding allergies. We’re not talking intolerances here, though they come with their own set of hurdles; we’re talking serious, scary, life-threatening allergies. Both her girls have them and the lack of awareness surrounding them, as she mentions below, is staggering…
Over to Lindsay…
My start to motherhood wasn’t exactly normal, if such a thing exists. Admitted to hospital at 26 weeks pregnant, Lola was born at 31 due to pre-eclampsia. It was not ‘how it was meant to be’. The days in hospital were excruciating at times but we felt lucky to finally make it home when she was a month old. Eczema (the key focus of this year’s Allergy Awareness Week) and gastro symptoms began early on but it was not until she got older we realised the extent of her allergies and their huge impact on her life, and ours.
On her first try of egg at 9 months old, I knew instantly something was wrong. We had no history of food allergies in the family yet I was apprehensive about her trying new foods, which I put down to her severe reflux and struggle with eating lumps due to being premature. She tried a small taste of well cooked egg and was immediately unsettled, followed by violent vomiting and then her whole body became covered in hives and frighteningly swollen. This was the first sign her allergies were more severe and was followed by years of trial and ‘error’, multiple tests, diagnoses and many scares.
We were referred to a paediatric allergist at hospital but were warned it would be a long wait. After weeks of waiting we were then informed this department was full and we had to move to another hospital and wait again. 6 years on I am now far more aware of the desperately too few numbers of specialists there are and frighteningly fast increases in cases of food allergies.
‘In the last decade, the cases of food allergies have doubled and the number of hospitalisations caused by severe allergic reactions has increased 7-fold.’ (EAACI, 2015)
This is not the only issue facing allergy patients and parents. Allergy is often unrecognised and, with a completely unpredictable nature and terrifyingly fast growth rate, more recently huge concerns have arisen regarding the reduction in prescriptions of life saving adrenalin pens. As a mother of two children relying on these, this terrifies me and motivated me to join a national campaign against these cost cuts. The #alwayscarrytwo campaign* is run by two other allergy mums and myself, all driven by keeping our children safe!
Now allergies are a huge part of our life. Lola, now six, and her sister Roxie, who is four next month, both suffer from multiple food and environmental allergies. Lola is allergic to egg, peanuts, tree nuts, dairy, soya, fish and tomato while Roxie is to dairy, citrus, kiwi, strawberry and egg. They both have oral allergy syndrome. Roxie also suffers with rhinitis and Lola from asthma. Reactions are varied and at worst react without even touch e.g. via contact from a shared toy with a child who has earlier eaten. Any mum who has been to baby/toddler groups will know how many children walk around with food in their hands… to an allergy mum it honestly seems like food is everywhere. Kids are messy. It’s all over their faces, crumbs on the floor, on clothes and therefore on the toys children play with. To some children these crumbs alone are all it takes to cause life threatening anaphylaxis.
It sounds extreme which is probably why so many allergy parents are misjudged as being overprotective. It’s not overprotective it is, quite literally, life or death and the parents who having to justify this are the ones who have often seen their children narrowly escape death, struggling to breathe. We need food to live but for allergy patients, food – even a tiny amount – can quite literally kill.
Ignorance is one of the biggest challenges I’ve faced. I try to be understanding and know I would never be as educated as I am now if I had not been through it but it is hard when you are so often challenged with questions such as ‘surely they can have a little bit’ or ‘well at least it’s just food’. Then there are the people who seem to disbelieve it could be ‘that bad’. And then there’s the much, much worse…
A friend recently shared on Facebook, “It takes a village to keep a child safe” and this couldn’t be truer. Whilst we have had huge support from family and friends, sadly not everyone is supportive, especially since Lola has started school. I can’t imagine ever questioning another child’s medical diagnosis to their parent simply because of the inconvenience of being asked not to bring a certain food into school but sadly this is not the worst of it. On one occasion a school parent took to Facebook to ridicule allergen bans in schools ending his cruel message with: ‘I hope everyone can cope in the real world’. I imagine, in his ignorance, that he simply failed to understand as I’m sure no parent would actually believe their child’s lunch was more important than another child’s life or that school is ‘the real world’. Fortunately, the ‘support’ I’m guessing he thought he would get was replaced by support for the parents of allergic children trying to educate him. I have come to terms with the fact that some people will never understand. Itis difficult to face the fact that some people simply don’t prioritise your child’s life. It has happened on several occasions in different ways but is always equally hurtful and frightening.
On a more positive note, this behaviour has taught me to be stronger, to fight for my children and teach them to be
independent and strong enough to stand up for themselves. Allergies have taught them life skills: that they cannot always have what they want; that sometimes life is not fair but the most important thing it has taught them is empathy. Something which adults who should know better have sometimes failed to give them is a quality I know they have in abundance and I know a large part of this is due to their allergies and what they have been through.
There are many challenges in addition to the struggle for understanding. Food packaging is a nightmare. While legislation such as the law passed in December 2014 requiring restaurants to declare any of the ‘Top 14 Allergens’ in their ingredients lists IS a step forward, it is still a minefield, with a frightening number of mistakes, some of which have resulted in death. Some, like my children, also have allergies not in the top 14! In addition, ‘may contain’ labelling is difficult to navigate and legally you don’t actually HAVE to declare that there may be traces, which poses a massive risk and endless calls to companies. Facebook guides become a lifeline.
Other products you wouldn’t even imagine pose a risk, such as shampoos, make up and even toilet rolls can contain nut oils! Recently I was bought a hairdryer which I had to return because it was infused with nut oil!!
The reality of multiple medications is also something people rarely realise as, ‘it’s just avoiding food, isn’t it?’ Lola and Roxie have multiple daily antihistamines and Lola has a tablet every time she eats as well. Allergies can cause multiple ongoing symptoms including skin problems and gut irritation. They carry emergency medicine, epipens and inhalers everywhere they go which often means they cannot be left at clubs, parties or school events.
Schools’ inclusions in activities that seem to inevitably always involve food can be a challenge. Bullying is a huge issue for allergic children and, sadly even at the age of six, we have experienced how cruel some children can be already. When your child starts school for the first time it is scary enough. Imagine placing your trust in a four year old to not touch other people’s food as it could kill them. At its worst, Lola had a six week period when she had 20 reactions. Everyone dreads getting THAT phone call from school, I learnt to expect it. This was not from consumption or any wrongdoing on the school’s part, but one of the difficulties of contact allergies.
I have two quirky, independent, empathetic and amazing girls and allergies are part of who they are. I try to make it as positive as possible and, while I know they have suffered hugely, I also hope it has shaped part of their amazingly kind and caring natures.
I worry for their future and hope that my girls’ love of being unique remains strong for the challenges that they will face and I will continually fight for them, which I know has made me a better mum.
Lindsay’s Top Tips for dealing with allergies:
– If you suspect an allergy go to your GP.
– Isolating foods during weaning and food diaries can help keep track of allergies
– Be prepared with alternatives, especially at children’s parties and events
– Talk to children early on. Lola and Roxie learnt ‘No touch other peoples food it makes me poorly’ from age 1 and it helped hugely.
– For schools wanting further, detailed information regarding allergies, this page is well worth a visit.
*The #alwayscarrytwo campaign was set up by Angela Waters, Iris Jones and Lindsay Wertheim following the BSACI (British Society for Allergy and Clinical Immunology) changing guidelines, which put allergy patients at risk by reducing the availability of life saving adrenalin pens. We are campaigning against this, with over 47,000 signatures so far. We desperately need support so please help by signing our petition.
Lindsay, writing for The Mother Side xx