For many families, food allergies are frightening. They can lead to life threatening, severe allergic reactions known as anaphylaxis. But the good news is the Sydney Children’s Hospitals Network is here to help.
We know that one in 10 children up to one year of age are affected by food allergy and between four to eight per cent of children aged up to five years-old.
Below you will meet Oscar and Sylvia and learn of their parents’ incredible journeys to keep their kids safe and successfully get their babies off to school.
None of this would be possible without the help of Network Clinical Nurse Consultant Briony Tyquin via the NSW Anaphylaxis Education Program and the cooperation of local schools and other families that come into contact with our patients.
Food Allergy Week 2019 was held on 27 May - 2 June, to help raise awareness for parents and the community.
SYLVIA – Dairy, peanuts, tree nuts and legumes allergy
Welts all over Sylvia’s body appeared after her brother adoringly kissed her at three-months-old. Her brother had been eating peanut butter and the reaction was the first warning signs of an allergy.
Shortly after, Sylvia underwent food allergy testing.
“That’s when they confirmed dairy, peanuts and most tree nuts. They also added chicken and pork,” mum Amy said.
“When I gave her lentils at about 11-months – and that’s when she had her first anaphylactic reaction.”
Sylvia would get contact reactions – from touching a table at a café.
“Once she went down a slippery dip and got welts on her legs from a peanut protein ball another child had been eating,” Amy said.
Doctors recommended Sylvia’s parents should home school her, after another frightening anaphylaxis reaction on her fifth birthday - to a lemonade soft drink at a café, where she most likely drank from a straw that had been contaminated with milk.
“Schools were saying they were concerned they wouldn’t be able to keep her safe.”
Mum Amy heard about the NSW Anaphylaxis Education Program through a facebook group and met with CNC Briony straight away.
“The school really wanted to keep her safe but they weren’t sure how to do it. Briony was able to give the really clear plans on how to deal with it on a daily basis.”
The school introduced simple strategies on Briony’s advice. Now everyone has to wash their hands before they come into the classroom, there is a designated spot for Sylvia to sit and eat and a staff member cleans the area before Sylvia sits down and eats.
“Some of the kids ask to have things left out of their box so they can sit with her at lunch, so she has buddies every day.”
Her EpiPen is kept in a central location at school and there are school EpiPens accessible to staff at different locations around the school.
Mum Amy expressed her relief that they had been so lucky to find a good school happy to accommodate their daughter and couldn’t thank the other parents enough for being so understanding.
“She really seemed like an impossible case and we made it work. It’s been life changing for us.”
Sylvia is now in Year One and her current risk management strategies at school are working well.
OSCAR - Dairy allergy
When mum Jenny fed her nine-month-old baby boy a food pouch from the supermarket, she never imagined the next minute he would be fighting for life.
“We had to call an ambulance and wait. I thought I had killed him, it was terrible,” Jenny said.
While Jenny was aware of her son Oscar’s allergy to dairy, the ingredients list wasn’t clear and had cheese buried down the bottom of the packaging, the anaphylaxis reaction shocked her.
“He’d had minor reactions at four and six months old when my daughter put a dummy in his mouth and he had only got a rash.”
After the frightening incident, the house became a dairy-free zone and, as Oscar grew, regular testing continued with the Allergy and Immunology teams at The Children’s Hospital at Westmead.
“We don’t eat out or do takeaway, I just cook everything.”
“When he was born I had to go the Vegan shop in Newtown, but now we are lucky you can dairy-free things everywhere, even dairy-free Magnum icecreams.”
Six months before Oscar was due to start school he had a severe reaction during a food challenge and this is when his family were told about the NSW Anaphylaxis Education Program.
“I was really overwhelmed. My husband and I thought how are we going to send him to school?” Jenny said.
“That’s when Briony stepped in.”
“We had a meeting with the principal and teachers' aids, just to outline to them how important it was that Oscar needed to be safe. It was so good to have someone there to represent us. I would have been lost otherwise,” mum Jenny said.
BRIONY – Clinical Nurse Consultant (CNC) at the NSW Anaphylaxis Education Program
Educating families and schools and making environments safer for kids with severe allergies is Briony Tyquin’s mission in life.
“Every time a student has an anaphylaxis reaction in a NSW public school it’s reported to me,” CNC Briony said.
“We follow up every student, we ring the school and investigate what happened and if there is anything the school or family can do better to support the child.”
In Term One of this year, there were more than 50 episodes of anaphylaxis across NSW public schools.
One of the aims of the Network’s NSW Anaphylaxis Education Program is to work with families and schools to help set up an Individual Health Care Plan – to help manage the risk of an allergic reaction and make things as normal as possible for the child.
“I see parents and their kids with allergies before they start school to talk about how to manage the risk at school. I try to normalise things,” CNC Briony said.
“Kids with wheat allergies sit next to kids eating sandwiches every day and it’s with good management strategies that it’s safe for them to do this.”
As a parent, Oscar’s mum Jenny, says it’s been scary, stressful and a steep learning curve because you really have to educate yourself as a parent.
“I’ve joined facebook groups, ask a lot of questions, but Briony has been amazing,” Jenny said.
“She called the school and offered all the staff anaphylaxis training.”
“You don’t want to seem like a hysterical overbearing parent and it was so good to have someone at school to represent us, otherwise I would have been really lost,” mum Jenny said.
Oscar is now eight-years-old and thriving – happily and safely attending school.
The Network’s NSW Anaphylaxis Education Program is run out of The Children’s Hospital at Westmead and is a free service available to parents, carers and young people across NSW. Courses are also offered for schools, preschools, childrens’ services and health practitioners.
For further information or to book an appointment with the NSW Anaphylaxis Education Program phone (02) 9845 3501.