Today’s interview is with Sarah, Mum to Isaac who is allergic to milk, eggs and nuts. Isaac was diagnosed with multiple food allergies as a baby, he has grown out of some but remains allergic to three big ones – milk, eggs and nuts. Sarah carries Epi-pens for Isaac but fortunately he hasn’t had to use them.
Thanks Sarah for taking time to do this interview. How did you first find out that Isaac has food allergies?
Isaac was 12 weeks old when I found out he was allergic to cows milk. I had been breastfeeding but due to sleepless nights and a constant desire for milk, I started to introduce formula milk. Initially this was ok- as I was using pre prepared cartons of formula. However one night I breast fed him and ‘topped him up with some formula milk I had prepared using powder and boiling water. Isaac was very unsettled during the feed, intermittently crying out and I just assumed it was because he was still hungry so kept pushing on with the bottle. I eventually put him to bed and within an hour, heard him whimpering and moaning. I went up to check on him and noticed immediately that something was very wrong. Isaac was lying in bed, red, swollen and had vomitted. I picked him up and examined him and noticed urticaria all over his body and that he had an extremely fast heart rate. I shouted for my husband to call an ambulance straight away and he was rushed to the Emergency Department.
At what age was Isaac when the allergies were first diagnosed?
It was diagnosed that night in the Emergency Department. As the reaction had been so severe, it was easy to know the cause. The The Emergency Department were not particularly helpful and did not refer us onwards. They just told us to avoid formula milk and see our GP.
We went to see our GP the next working day and asked for a private referral to a consultant paediatrician specialising in allergies. It wasn’t until I spoke to my cousin, that I found out that our local hospital had an allergy clinic and I went back to the GP to request a referral for there.
At the allergy clinic when Isaac was 5 months, we also found out that he was allergic to eggs and nuts through skin prick tests. During weaning I avoided all dairy, eggs, nuts and soya as a precaution. While weaning I did find out he was allergic to gluten, oats and tomatoes though. Thankfully, by the age of 2 and a half he grew out of those allergies (they were not severe to the point of anaphylaxis- just hives and eczema). He can now eat all wheat, gluten and oat products and tomatoes.
We have since been into hospital for both egg and nut challenges and he remains severely allergic to both products. Tiny amounts produced instant urticaria and eczema.
How did you find the process of getting a diagnosis?
Quite straightforward, however we felt unsupported for a period of time due to lack of knowledge from head staff and our GP about services available.
Is Isaac in childcare or school? How did you find leaving him in someone else’s hands when he has multiple allergies?
Isaac is in school and has been in childcare since he was 1 years old. When we went looking for an appropriate nursery, our main concern was finding one that we felt were confident not only in managing his allergies but also his dietary needs. At the time, Isaac had multiple food allergies including dairy, egg, nuts, wheat and tomatoes. The nursery we had were fantastic and were able to accommodate all our needs.
When Isaac started school in September this year, it was a very scary time, as we knew there would be hundreds of children in the school as a posed to 30 children in his nursery. Although the school has taken his allergies seriously and are trained appropriately, it is still worrying.
Sometimes it can be quite difficult to diagnose and get support for allergies. Did you have good support from your doctor/allergist?
Our GP and the Emergency Department were not aware of services available. Thankfully, I had done a lot of research and was able to tell our GP who to refer us to. The allergy clinic were amazing and we have had fantastic support from the nurses, paediatricians and Dieticians there.
What did you find most difficult about putting Isaac on a free from diet?
Weaning was a very scary experience because although I knew Isaac was cows milk allergic, I did not know if he had any other allergies. I proceeded very slowly with weaning but during the process had a few more emergency admissions following allergic reactions. Because Isaac was so young, he has never known a diet with dairy, eggs or nuts but during the first year and a half of his life, he couldn’t have wheat or tomatoes either and so making food for him was very stressful. There was no way we could eat out anywhere or at anyone else’s house unless I took food with me for Isaac and going away involved a lot of pre planning.
Have you a favourite free from product?
I like Alpro products, Moo Free, Sainsburys own brand and Kinnerton.
Is there one product you wish you could find for your child what would it be?
Ready made cakes (milk, egg and nut free).
Do you find your family and friends understanding?
Very much so.
How do you find eating out with a child with allergies?
Impossible initially. I would take special food from home for Isaac. I am a lot more confident these days and ask lots of questions.
Did you and your family go free from also?
No, although I do make a lot of meals that we can all eat.
Thanks so much Sarah for sharing Isaac’s story with us. It is a huge challenge with the multiple food allergies, you seem to be handling it very well! The school stage sounds daunting but great that it seems to be going well! It seems to be a recurring theme with allergy parents I have spoken to that their initial point of contact – their GP or health nurse have poor knowledge regarding allergies and unfortunately that parents are having to research themselves to help get a diagnosis. I can imagine it was very difficult to deal with multiple food allergies, and although egg, nuts and milk are still a huge challenge, it is great that Isaac has grown out of the other allergies. Thanks again for taking the time to do this interview and I wish you and Isaac all the best.
If you would like to take part in this interview series of real life allergy stories on dairy free kids, please drop me a line laura @ dairyfreekids.ie