When food becomes the enemy for children living with allergies

Looking at Llewelyn Pritchard tearing around the garden like any other seven-year-old, it is hard to imagine that eating simple things like eggs or chocolate could kill him.

Llewelyn was diagnosed as suffering from anaphylaxis, a severe allergic reaction, when he was four months old.

Just sitting next to someone who has had a cup of coffee with milk in can trigger a severe allergic reaction. If he were to eat dairy products, eggs or nuts the reaction could be so extreme it might prove fatal.

It means he has to have a lot of his meals in a different room from his two-year-old sister, Phillipa, causing a logistical nightmare for his mother, Alethea.

“It was really difficult when Phillipa was smaller as she would throw food around and if egg or anything dairy went near Llewelyn he would come up in an angry rash,” says Alethea, from Haxby, York. “When she has chocolate or cake I have to give it to her in another room. It is really hard.”

It also means that Phillipa has to use different cups, plates and cutlery from her brother. Everything has to be wiped down with wipes constantly for fear that Llewelyn may have a reaction. Birthday parties are particularly difficult, said Alethea.

“I try to find out what they are having so that I can make him the same as them but with his own ingredients so that he doesn’t stand out as much.”

Alethea first noticed that something was wrong when she weaned Llewelyn at four months.

“We’d had a very traumatic time with Llewelyn when he was born,” she explains. “He didn’t breathe for 14 minutes after he was born and then had to undergo neurological tests. Everything was fine but it was very stressful. I started to wean him a bit early because he wasn’t sleeping. When I first gave him a jar of baby food he was fine, but then the second time he was immediately covered in hives on his arms and neck and his face started to swell.”

Luckily Alethea is a nurse and she realised what was happening and gave Llewelyn an antihistamine before taking him to A&E where he was given a dose of steroids.

“They did a blood test and found that he was allergic to eggs, milk and nuts, although they later added kiwi and horses to that list.”

It meant that up until the age of one Llewelyn’s diet consisted of broccoli, carrots and potatoes before eventually he could start eating meat.

“It became virtually impossible to go anywhere,” says Alethea. “His condition is so severe that if he sits on the sofa where someone has been sitting who has had a coffee with milk hours before he will come up in a rash. When he was little his dad had had a coffee eight hours earlier and when he hugged him Llewelyn got a rash all over his legs.”

Llewelyn has adrenaline in case he eats something he shouldn’t but thanks to his parents’ vigilance he has never gone into anaphylactic shock.

Food allergies are thought to affect around five to eight per cent of children and two to four per cent of adults.

NHS hospitals in England dealt with over 20,000 admissions for allergies in the 12 months between February 2013 and February 2014 and every year around 20 people will die from anaphylaxis.

“School have been amazing,” said Alethea. “It is hard as children want to share their things, but that could be very dangerous for him.”

Llewelyn has to undergo regular blood tests at York Hospital and cannot eat anything new until he has been tested for a reaction.

“They have said that his allergy to peanuts is reducing which is very unusual so we are hopeful that it might mean he will eventually grow out of it, but we can’t take any chances.”

Alethea this month started an anaphylaxis support group in York for parents of children with severe allergies, after she started a similar group when they lived in Haworth, West Yorkshire.

“There is a lot of confusion about food intolerance and food allergy. A lot of people are now suffering intolerance which can be awful, but it is nothing like a severe food allergy,” she said.

“I have also faced some discrimination from people who just do not understand what it is like to have a child with severe allergies,” says Alethea, who has just returned to work full-time as a nurse after taking a break to care for Llewelyn.

“I decided to set up the support group not just to give advice to people but to share our experiences and let people know they are not alone. It really does help. We had six mums come to our first meeting this month and all their children had multiple food allergies like Llewelyn.

“For the parent of a child with anaphylaxis, it’s extremely scary. Food becomes your enemy in a way and you have to control the environment. Many people don’t realise what a difficult thing it is to keep him safe and healthy.”

Lynne Regent, the Anaphylaxis Campaign chief executive, said: “It’s brilliant that Alethea has decided to run a support group for us in York. Many people in the general population do not understand just how serious allergy and anaphylaxis can be.

“Our support groups, like the one Alethea is running, provide a vital touch point for affected families and individuals and are a really positive way for them to support each other.”

Llewelyn copes very well with his condition and doesn’t eat anything unless his mother gives it to him and it is safe. In time, if he doesn’t grow out of it, Alethea knows he will have to learn to manage the condition himself.

“The food really doesn’t seem to bother him that much, it is not being able to stroke horses that he gets most upset about,” she said.

n For more information on the support group email [email protected]