This week I speak with Luisana whose daughter Adanna has multiple food allergies. Adanna is 7 years old so Luisana has been parenting a child with multiple allergies for a long time. It is very interesting to hear about her experience and advice.
Can you tell me how old your daughter is and which allergies she has?
Adanna just turned 7. The allergies she has are Milk, Fish, Eggs, Nuts (all types), raspberries and blackberries.
How did you first find out about her allergies?
When Adanna was a baby she has severe eczema and was constantly spewing up her formula (I couldn’t continue breastfeeding as she was constantly hungry). I brought her to the doctor and they told me it was just how babies are, and changed her to Aptamil easy digest milk. As Adanna was a hungry baby I started to feed her solids early, her vomiting started to worsen and her eczema. She wasn’t gaining any weight and I was concerned. I brought her back to the doctor straight away and they sent her to the emergency department as she was very weak from constantly vomiting. As her mother, I knew something was wrong.
The hospital discharged her with a viral thing and I was again told that’s how babies are.
I was very angry as I knew there was something not right. As this was going on I was moving location and when I had to bring her to a doctor I went to a different surgery. As soon as I walked in the doctor recognised straight away the eczema on her cheeks was a sign of food allergies. The doctor sent me straight to Crumlin hospital for a blood test and followed them up in a couple of days. At this stage Adanna was prescribed Nutramigen milk.
At what age was Adanna when the allergies were first diagnosed?
Around 4 months old.
How was the process of getting the diagnosis?
It was very stressful and frustrating, as the doctors were not listening to me.
It sounds like it was very difficult to get her diagnosis, and this appears to be a very common situation unfortunately. Did you have good support from your doctor/allergist?
When I changed doctors, I was at ease as she knew what steps to take. Trying to see an allergist was very hard as there were only two in Ireland at the time and a very long waiting list.
Did Adanna attend preschool or go to a childminder before starting primary school?
Yes, Adanna attended preschool.
Was it difficult for you to trust her carers at preschool because she had so many allergies?
I had a lot of trust in the preschool as Adanna’s sister had already been there for 3 years and her Montessori teacher also had a daughter with allergies. However, preschool was difficult for other reasons.
Adanna was constantly sick, as she picked up everything including the cold sore virus, which spread through her skin very fast (as her eczema was open). I was isolated for 9 days in hospital with her.
And how was the transition to primary school?
In junior and senior infants it was difficult as the school would call me because her eyes were swelling/ streaming. Also her eczema was on her hands and used to bleed occasionally because of something she ate or the weather. I was stressed at the beginning but her school took my worries on board and made me feel secure by training all teachers and ensuring there were epipens readily available. I also contacted Anaphylaxis Ireland
and got as much information as I could to educate myself and the school.
In general I don’t leave Adanna with anyone as I don’t feel people have enough awareness of allergies. My family maintains I baby her/ wrap her in cotton wool. People don’t understand the severity of it. This results in me not going out or living my own life.
Is Adanna able to speak now about her own allergies and do you find it easier now you can trust her to know herself if something unexpected comes up?
Adanna is aware of her allergies, and can tell you what she is allergic to, she can tell you if she is itchy or getting hives. She is aware what some foods can do to her body. Even though she is well aware I still am very careful as I do get scared. I find that people don’t take me seriously including family members. I get told I am wrapping her in cotton wool.
I had an incident where a friend of mine thought I was joking and I was being dramatic, until one day they gave her some chicken legs which they had marinated with crayfish powder, as Adanna loves food she was eating away like no tomorrow and within 10 minutes she went into anaphylatic shock. That day my friend apologised to me as he understood then what we are faced with.
Has Adanna grown out of any of her food allergies?
When Adanna was younger she also had an allergy to wheat which thankfully she has grown out of it. She can tolerate it but cannot consume a lot at once.
Have you a favourite free from product?
I love the free from Plamil chocolate spread. As I use it in cakes and sandwiches.
If there was one product you wish you could find for Adanna what would it be?
Ready made frozen pizza.
How do you find eating out with a child with multiple allergies?
I find it very hard as sometimes you think you’re safe and as soon as you get home she has hives all over her stomach or get diarrhoea.
Did you and your family go free from also?
Yes I buy dairy free butter, I myself drink soya milk and when I make cakes they are always free from.
As a mother looking after a child with multiple food allergies for many years what differences have you noticed in people’s attitudes and availability of food alternatives in this time? Have things become easier?
Things have become easier in the last year as I am well educated in free foods, and have an understanding of where and how to get it. Also people and supermarkets are more aware of allergies as it is becoming more frequent.
What advice would you have for a parent whose child has just been diagnosed with a food allergy?
Don’t panic. There is help out there. Make sure you get your child referred to an allergist .
Thanks again Luisana for taking the time to do this interview. I can identify with the difficulty in getting a diagnosis, I haven’t spoken to one person yet who has had a straightforward diagnosis. It sounds very difficult managing the amount of allergies Adanna has and even though she is aware of them and able to talk about them it doesn’t make it a whole lot easier as they are so severe. It is so sad to hear that your family and friends still think you’re just wrapping her in cotton wool, and a shame that it had to take her having an anaphylactic shock in front of one friend before they realised the severity of the situation. I can totally understand then not wanting to leave her in anyone else’s care. Hopefully attitudes will slowly change and with better allergy education people will start to realise how severe allergies can be.
With regard to the school it is wonderful that they are on board with the epipens and getting trained and that you were able to ease some of the worry by correct training and information. It is great to hear that Anaphylaxis Ireland
were a good help and that they are a good source of advice. Wishing you and Adanna the very best and thanks again for taking the time to talk to me about her allergies.
If you would like to take part in Allergy Stories by doing an interview for dairy free kids please drop me a line at laura at dairyfreekids.ie. I’d love to hear from you!