This week is food allergy awareness week. Over the next five days, I’ll be handing over my blog to parents whose children suffer from allergies in a bid to raise awareness and eliminate any associated misconceptions.
I’m Katy, otherwise known as Katykicker, and I blog about money, parenting, lifestyle and much more. I am married to Thomas and we have one daughter, Daisy, who was born in March 2016. Daisy has FPIES (Food Protein-Induced Enterocolitis Syndrome), and multiple other allergies.
1. Who suffers from allergies in your family, when were they diagnosed and what allergies do they have?
My daughter Daisy, 2, has FPIES. Daisy was first diagnosed with an allergy at 10 days old and it took until she was 18 months old to be formally diagnosed with FPIES. Daisy is allergic to dairy, soya, chicken, coconut, gluten and Xanthan gum.
2. How long was the process of diagnosis, tell us about your experience?
The process of diagnosis was a long one. At 10 days old Daisy was diagnosed with suspected CMPA -cow’s milk protein allergy. Then at 6 months old Daisy was diagnosed with suspected non-IgE allergies (if you have an allergy, your immune system overreacts by producing antibodies called Immunoglobulin E or IgE. Non-Ige is a type of allergy which is not caused by IgE antibodies). At 10 months old Daisy was failing to thrive and unwell, and it was then that FPIES was finally suspected – despite me suspecting it for many months by now. Daisy wasn’t formally diagnosed until 18 months and even now we are finding more allergens, which is really sad for her as it means she’ll be well for a month or two then something new will be introduced and she will become unwell again. Our experience was not a nice one at all right up until she was 2 years old. My own Doctor accused me of being an over-anxious parent and advised me that my daughter looked ‘fine’, even on days when she later ended up in hospital.
3. How do these allergies affect you and your families on a day to day basis?
On a day to day basis, Daisy is unable to eat most ‘normal’ meals because of her long list of allergens. We are not able to eat out often because of the risk of cross-contamination also. Generally, I would say that I have the attitude that it could be a lot worse and I’m always trying new recipes and to give Daisy the best possible nutrition that I can.
4. Have your child’s allergies impacted your travel, if so how?
Yes! We don’t travel abroad at the moment for a variety of reasons. It would be a nightmare to take enough food for Daisy, to be sure of covering all meal-times and any sudden aversions. Also, travel insurance is rather expensive too. Then add in the worry of being in a foreign country, and Daisy ending up in hospital, and it just does not feel worthwhile for us. Instead, we go to Centerparcs a lot!
5. If your child is old enough, do they understand their allergies? If not, how do you plan to explain it to them in the future?
Daisy does not yet understand her allergies, because of her age. However, recently Daisy has become aware of feeling sick, and generally not feeling well when she is about to have an FPIES episode. When Daisy is old enough I will be telling her that she is unable to eat certain foods, but not to worry as there are lots of other lovely foods that she can eat.
6. Do you feel that people are understanding of your child’s allergies? If not, why do you think this is?
Most people that know us, yes. However, in the past I have had problems with certain people believing that I am just over cautious. Of course then Daisy has to have a reaction before people see how bad it is themselves.
7. Are there any resources or websites which you’ve found particularly helpful?
I have joined the FPIES UK group on Facebook and I have found that a good source of advice. Also, it is nice to have other parents, in similar circumstances, to talk with about things.
8. What advice would you give to any parent whose child has just been diagnosed with an allergy?
I would say that it IS going to feel daunting. For ages probably. For me, I found that each time I got used to one allergy we would start to have more problems and find another allergy. My daughter has multiple allergies, as you can see from my answers to question 1, but I would say that home cooking, careful shopping and use of the Food Maestro app has helped significantly.
It’s Food Allergy Awareness week from 13-19th May. Make sure you pop back for more Q&A’s!