The series of articles about daily life with a child with a severe peanut allergy was read by many ECARF followers, including Annette Steffen (43). Annette’s son Justus (10) also has a severe peanut allergy, in addition to an allergy to nuts and other legumes. In reading the interviews, Annette discovered a lot of points in common but also had some different experiences to share. Here is what she told ECARF.
Hardly any invitations
Until Justus was old enough for school, he suffered from severe allergies to milk, egg, soya, and wheat products since birth. Although he got along well with other children, he was hardly ever invited over to play due his allergies. “It was pretty obvious”, recalls Annette. “Instead, Justus‘ friends came over to our place more often. There were never any problems. Of course it was a shame that he missed out on the parties”, she says regretfully. “I thought the other parents were overly cautious. Because Justus had so many allergies, we always gave him his own food to take along anyway.”
The Steffens have had good experiences with controlled food challenges. “Our son had an anaphylactic reaction to milk for many years, sometimes to just a few millilitres”, Annette explains. “If someone had said to us back then that he would one day be able to eat normal ice cream, I would not have believed it. We were only able to determine that Justus had lost some of his allergies by doing the food challenges.”
No more school meals
The caterer at Justus‘ school serves a meal for allergy sufferers that excludes the most common allergens. However, Justus had developed an eating disorder after some time. “We think he is afraid of a potential allergic reaction, so he refuses a lot of the food”, Annette explains. “This is why he couldn’t have the school lunch.” She then cancelled Justus’ school meals and prepares his meals for the entire week. “Of course it takes a lot of time. For school trips there are other things that need to be considered.”
Never travelled abroad
Going on holidays is not an easy subject for the family. “We have never travelled abroad before. It’s hard enough to understand all of the words in an ingredients list in German and to identify hidden ingredients. We didn’t feel at all confident that we could understand the word for each allergen in a foreign language. On top of that, Justus reacted to very commonly used allergens. It would have gotten very complicated”, she says.
Sharing experiences online
Annette found it helpful to communicate with other parents of children with allergies. “It is incredibly supportive to talk to someone who understands your uncertainties and what your child is going through”, says Annette gratefully. She still participates actively in these exchanges, especially in online forums such as the Facebook group of NAN e.V. (Nut/Anaphylaxis Network in Germany).