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How Coco survived 10 years with a life-threatening allergy.

Gold Coast mother Terran was getting ready to return to work when her six-month-old daughter first displayed allergy symptoms after drinking cow’s milk formula.

“As she drank the formula, I started to notice that the skin around her mouth had started to go red.  Within half-an-hour her body was covered in hives.  It looked as though she had 1000’s of insect bites.   Her eyes had started to swell,” said Terran.

Terran with her daughter Coco. Image supplied. 

The new mother rushed to the doctor, where her daughter, Coco, was given a steroid shot to relieve the symptoms.

"The hives slowly went down.  The GP told me she had suffered an allergic reaction, but was unsure if it was caused by the dairy or another ingredient in the formula.  He suggested I keep trying different formulas until I found one that she didn’t react to - advice which could have killed my daughter had I followed it," she said.

After seeing three different practitioners, the Gold Coast mother was referred to Paediatric Allergist and Immunologist Professor Pete Smith.

"We discussed her reaction, her mild eczema, her frequent vomiting and she underwent a skin prick test. I was expecting to be told that she had a dairy allergy, but were shocked and devastated to find out that she also had a large reaction to peanuts and tree nuts with milder reactions to dust, dogs, cats and eggs.  We were given an overwhelming amount of information that day, and a script for two EpiPens," she said.

Coco, 10, is currently allergic to peanut, dairy, cashews, pistachios and cats and could suffer anaphylaxis if she ingested peanuts.  She has outgrown her allergies to egg, most tree nuts, dog, feathers and grasses and has suffered badly from mosquito bites.

Guilt and fear.

Coco has made it through the past 10 years without a severe allergic reaction, but that doesn't mean it's easy to manage.

"The biggest challenges of parenting a child with allergies are the guilt and the fear," she said.

"When Coco was diagnosed I was overcome with guilt as I was sure it was something I had done. Over the years I have realised that even if it was something I did or didn’t do, I can’t change the past.  Guilt still rears its ugly head whenever I have a down day, or I see my daughter upset about her allergies.

"The fear is harder to overcome.  Each new stage in her life brings up different challenges and I am constantly worried I haven’t done enough to keep her safe.  My heart still stops every time the school rings as I assume they are calling to tell me she has had a reaction and is in an ambulance or worse.  She is starting to go on camps at school and I worry that I haven’t packed enough food, the mobile phones won’t work or no-one will realise she is having a reaction until it is too late.

"In a few years she will be dating and I worry she won’t feel comfortable to ask her boyfriend to avoid her allergies or brush his teeth before they kiss.  I worry that when she is 18, she will have a few drinks and alcohol will impair her ability to make safe food choices.

"Teens are at a far greater risk of anaphylaxis as they are known to take risks, and often won’t carry their EpiPens as they don’t want to stand out."

Coco's allergy treatment has required adaptability. Every age has needed a different management.

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"When Coco was little, it was very difficult.  Going to parties where all the kids are covered in ice-cream and chocolate used to give me a panic attack," she said.

Coco with her mum and dad. Image supplied. 

After being cared for by her grandmother for a few years, Coco attended a nut-free day care centre. However, the transition to primary school was "daunting" for her parents.

"We chose a school that seemed were compassionate about her care, and willing to work with us to provide a safe environment. Her teachers and classmates have all helped to keep her safe, and after over five years there she has only had some very mild environmental reactions," said the Gold Coast mother.

Coco has been able to take on some of the responsibility for keeping herself safe from her life-threatening allergies. Her mother says she is a "sensible and responsible" child.

"We have always taught her to avoid her allergens, and to never accept food without checking with us that it is safe.  She washes her hands before and after eating. She has been responsible for carrying her EpiPens around school for the last few years.

"We ensure she always has two pens readily available wherever she is. I still attend birthday parties with her and bring her own food, so that we don’t place that stress on the hosting parents," said Terran.

Coco has completed a special first-aid course to help with her allergies. Image supplied. 

'So much hate.'

The family say they are surrounded by people who will do anything to make their daughter safe but some make the situation harder.

"As supportive as the people in our lives are, I have seen so much hate out there against allergy parents and children.  Every time an article is run or a news story airs we brace ourselves for the onslaught of hurtful and ill-informed comments that will follow.

"Many people will throw out their theories - 'she must have wrapped her kids in cotton wool', 'she must not have eaten xyz while she was pregnant', 'she obviously didn’t let her kids play in dirt like we did when we were kids'.

"There are all of the people that object to even the smallest accommodations being made for allergic kids.  An article was run last week about day care centres using gluten-free pasta and play-dough so that kids who are allergic to wheat or suffer from coeliac disease can participate in these activities.

"Some suggested that we should home school our kids, while others suggested that they should set up special allergy schools so 'normal' kids aren’t affected by these restrictions...I have even read people suggesting that food allergies are natural selection and that our kids should just be left to die to strengthen the gene pool."

Coco and her mother are both aware it is a life and death matter.

"I asked Coco what the worst part of allergies was.  She simply said that it was not being able to eat what all the other kids can...She knows that she could die from eating her allergens, and that is a heavy burden."

Having allergies is easier when we all help those who have them.

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