Allergen Introduction in Everyday Life: a Parent’s Story
In this interview, Lynn, mum of 3.5-year-old Julia and a member of the Luxembourg Allergy Network (LAN), shares her family’s journey with early allergen introduction and immunotherapy.
Can you briefly tell us your daughter’s allergy story?
Julia was fully breastfed for the first six months of her life and started solids at around 6.5 months. When she was nine months old, she tried omelette for the first time. She sucked on it, and I noticed a rash on her neck. Because she was wearing a new plastic bib, I initially thought it was a reaction to the plastic.
On Julia’s first birthday, I prepared noodles with boiled egg. This time, she immediately developed a rash all over her body, her eyes became swollen, and she vomited. That’s when I made the connection to egg.
We consulted our paediatrician, who carried out a blood test. The results came back positive for egg and all tree nuts, and we were given an emergency medication kit. Later, we saw a specialist who carried out further testing and told us that Julia was not allergic to nuts.
When Julia was 2.5 years old, she ate a Chinese soup containing peanut, sesame and coconut. She immediately developed a rash, vomited, started coughing, and her airways began to close. I administered adrenaline, and we were taken to the Kannerklinik. In the same week, Julia was accidentally given a spoonful of peanut mousse, not knowing it also contained 29% cashew, which resulted in another hospital admission.
What motivated you to start allergen introduction, and later also immunotherapy?
I had already heard that something like this existed, but it was Dr Morel who really explained everything properly to us and encouraged us to get started. We had seen how severe Julia’s reactions could be, and I simply wanted her to be able to live her life as normally as possible, without constantly having to be afraid.
And the earlier these desensitisation and immunotherapy treatments are started, the better they tend to work. That’s why we were motivated from the very beginning to move forward as quickly as possible, in the hope that this will prevent life-threatening situations in the future.
Your daughter needs to regularly eat small amounts of foods she is mildly sensitised to. How did you organise this?
We were advised to avoid the allergens Julia tested positive to, and to start a closely monitored allergen introduction for those she was less sensitised to. This approach led to immediate improvements in her skin and behaviour (she had cried a lot as a baby), and since then she has had no more allergic reactions.
Every month, we had an appointment with Dr Morel to begin introducing a new allergen. Julia would have a skin prick test in the morning, followed by a small food provocation test. We started with a baked egg challenge, then walnuts (half a walnut per day), then hazelnuts, and so on. After nearly one year, we had already seen very positive results.
What does a typical day or week look like when it comes to preparing these portion sizes?
At the beginning, I prepared the allergens on a daily basis. As more allergens were introduced, it quickly became overwhelming. Because I work shifts as a midwife, we don’t always have a regular routine, and my husband also needed to know exactly what Julia had eaten each day. At first, I created lists and put them on the fridge with the date, each allergen and the quantity required, and we would tick them off daily.
Do you use specific systems that help you stay consistent?
Now I prepare all the allergens once a month. It takes me around 1.5 hours, but it takes the pressure off daily life.
After nearly one year of allergen introduction, we decided to pause further introductions in order to begin oral immunotherapy (OIT) for the allergens Julia is highly allergic to. We started with cashew.
I would describe immunotherapy as “a whole different league”. Julia must not sleep for two hours after intake, she must avoid physical exercise for three hours, and if she is sick or overtired, we have to consult Dr Morel before continuing. Currently, Julia eats all previously introduced allergens in the morning, while cashew (as part of OIT) is given in the afternoon.
How do you ensure that everything at home happens safely and calmly?
When we were introducing new allergens, Julia ate the “old” allergens in the morning and the new one in the afternoon, so we could monitor symptoms more closely. Once we reached the maintenance dose of an allergen, we started mixing it with the other allergens.
Now Julia eats her allergens from the medication box in the morning before school, and in the afternoon she has her cashew as part of OIT. Emergency medication is always readily available and kept in the same place.
What is the most challenging part of this daily routine?
The hardest part is keeping track of exactly what Julia has eaten and when. Because of my shift work, we don’t have a very regular daily routine, so we constantly need to communicate clearly with each other about what she is going to eat or has already eaten. That’s where the medication box has helped us enormously - it has made a huge difference.
Did you receive practical guidance from your allergologist or a dietitian?
From our allergologist, we received a very precise plan on how to introduce the foods. Whenever we had questions, she was always reachable by email and by phone, and if there was ever any doubt, we were given a new appointment very quickly to repeat a skin prick test, just to be safe.I can honestly say that we feel we are in very good hands.
We also saw a dietitian, but since Julia is allergic to foods that are, for the most part, relatively “easy” to avoid and don’t necessarily need to be replaced with alternatives, we didn’t receive many additional tips. However, I think that for children with allergies such as cow’s milk allergy, nutritional counselling can be much more helpful.
How do you feel about the process today compared to the beginning?
At the beginning, it felt like a mountain was standing in front of us, together with constant fear of “what if something happens?”. Managing the emergency care plan (PAI), prescriptions and medication expiry dates felt overwhelming. Eating out and going on holiday seemed impossible. Today, while challenges remain, we feel more confident and hopeful about Julia’s future.
At the beginning, you really wonder how you are ever going to manage all of this. But if you are committed and consistent, it is doable. Julia understands this too - when we tell her that she has to eat something, there is no longer any discussion.
We are now so well organised that it has become part of our daily routine.
Has immunotherapy changed your perspective on your daughter’s allergies or her future?
Absolutely. Julia has very severe reactions that require an adrenaline injection, and we are hoping that through immunotherapy she will no longer need this in the future.
I often say that if, in the future, she “only” gets stomach pain after an accidental exposure, that is something I could live with. What I can’t live with is the constant fear that, because of cashew, she might not be able to breathe, that her airways could swell, and that without adrenaline she would be in a life-threatening situation.
She has responded so well to all the other allergens that I am almost convinced that one day she will be able to eat cashew normally.
What would you tell parents who are just starting early allergen introduction or regular intake?
It would have helped me to speak with someone who had already gone through this journey and could reassure me that it is manageable in the long term. I’m now happy to speak with and support other families who are starting this process.
Don’t lose heart, and keep going. What feels like climbing a huge mountain at the beginning becomes only half as difficult later on.
It’s important to create tools and systems that make everyday life easier.
You also need to explain everything to your child - they understand much more than we think, and this helps avoid constant discussions.
Working together as parents is essential so that everything doesn’t fall on just one person. When you work as a team, you think of more solutions than you would alone. And consistency is the key.
Are there tools or everyday tips you wish to share?
- Create routines
- Explain to your child why this is important
- Create a visual overview of foods to avoid, with photos of allergens, names of the allergens in different languages and share it with grandparents, crèche, school and caregivers
- Use a medication box with small compartments - a real game changer
- Prepare allergens once a month instead of every day
- Keep an Excel list of medication expiry dates and set calendar reminders
- Get support from LAN, who can offer guidance and help you move forward
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