Supporting Parents and Children Living with Food Allergies and Anaphylaxis in Early Childhood – By Philippa Thompson

Reading Time: 5 minutes

 

‘As parents we looked forward to your future, what you will choose to become, who will be your friends…girlfriend/boyfriend…university/work/sportsperson. Then one day the perspective changed. That severely cold day when the ice was thick and dangerous on the ground and all advised not to travel. The news told us that the ambulance service were only attending for life and death situations. It was the 6th January 2010, my mum’s birthday so we rang her to sing happy birthday and have a chat. I was cross as you were messing with your tongue (I will always feel guilty for this) and not speaking to mum. I put the phone down and noticed your lip had become swollen and it was then I knew – you were having a significant allergic reaction. I had seen it before with the children I worked with and tried not to panic. Keeping you close I rang NHS direct knowing that I could put you in more danger if I tried to drive but also not knowing if an ambulance would come. I knew this could be life or death but I had to stay calm. Get him to hospital – stay on the phone – watch his tongue – the roads are dangerous but we have to go -all things in my head. We drove on empty streets sliding sideways down the road…me on the phone and reassuring Tom …asking him to poke out his tongue like a reptile catching insects! We arrived….rushed through emergency for more drugs ….observation and relief. Little did we know that this moment meant a change to all of our identities as both parents and child. Our lives would change and the continual concern of ‘staying alive’ would become the focus. Being seen as ‘different’ but with no support initially and the struggle with school began….’

Being a parent of a child in Early Childhood from conception to 8 years is both complex and challenging (Crnic & Booth, 1991). Being a parent of a child with a food allergy (FA) and anaphylaxis adds further complexities and challenges that are well documented in the health literature (Taylor and Lewis, 2018; Sanagavarapu, 2012, 2018; Vale et al., 2015; Cohen et al., 2004).

Anaphylaxis is increasingly recognised as a serious, worldwide public health concern. Food allergies (FAs) affect around 2 million people in the UK and 5-8% of children (Muraro et al., 2014), with FAs affecting between 6% and 8 % of children under 3 years in Europe and North America (Walsh, 2017; National Institute for Health and Care Excellence (NICE), Quality standard [QS118], 2016). Managing anaphylaxis and FAs can be particularly challenging in the context of Early Childhood Education and Care (ECEC) settings as most children are diagnosed between the ages of 0-8 years (Alanne, Laitinen and Paavilainen, 2014).

Government literature reports that 17% of allergy related fatalities happen while children with FAs are at school (Department of Health (DoH), 2017).Bock, Muñoz-Furlong & Sampson, (2007) also provide evidence that in community contexts such as care and education the risks of fatalities rise. However, the study of anaphylaxis and FAs remains a relatively new research field which is less researched than areas such as diabetes or asthma.

My doctoral research proposes to capture the experiences of parents wrestling with returning to work and finding an early childhood setting for their child. Trusting a service when they know that one mistake with food could cause a serious reaction and potentially be life threatening is difficult. Who do they trust to keep their child safe at all times as they have? Will they ever be able to relax at work with others taking care of and feeding their child? Will they check the labels? Will they have the expert knowledge and training that they need? Where will they keep the epipen? Will their child be alive at the end of the day?

At the start of this blog was an excerpt from a story I wrote at a difficult time for me in my son’s early childhood. He had started school and they wanted to lock his epipen and inhaler in the office. This caused a huge amount of anxiety as we knew it would be too late if it was kept there. Some staff seemed to consider us ‘difficult’ for being concerned and other parents were angry as their children couldn’t take peanut butter and Nutella sandwiches to school. He would be sat away from others in the dinner hall and felt isolated. Hearing recent practice of coloured plates and coloured aprons being used for children with food allergies reminds me of these days and the isolation.

Children with allergies want to be the same as everyone else; they want to eat what others eat and their parents desperately want them to have friends and be included.

They need to have a voice and make decisions about food so that there is some control. Is isolating children at the dinner table by the colour of their plate best practice or an overreaction to ‘health and safety’? What does inclusive practice look like for children with anaphylaxis? Do we sometimes forget the anxiety that these children and their families live with every minute of every day and see them more as a problem? How does the child learn to make good choices when the adult is in control? And finally, where is the training for practitioners to see past the medical label and understand the needs of the child and their family?

References:

  • Alanne, S., Laitinen, K., & Paavilainen, E. (2014). Living Ordinary Family Life With an Allergic Child—The Mother’s Perspective. Journal of pediatric nursing, 29(6), 679-687.
  • Bock, S. A., Muñoz-Furlong, A., & Sampson, H. A. (2007). Further fatalities caused by anaphylactic reactions to food, 2001-2006. Journal of Allergy and Clinical Immunology, 119(4), 1016.
  • Cohen, B. L., Noone, S., Muñoz-Furlong, A., & Sicherer, S. H. (2004). Development of a questionnaire to measure quality of life in families with a child with food allergy. Journal of Allergy and Clinical Immunology, 114(5), 1159-1163.
  • Crnic, K. A., & Booth, C. L. (1991). Mothers’ and fathers’ perceptions of daily hassles of parenting across early childhood. Journal of Marriage and Family, 53(4), 1042-1050.
  • Department of Health (DoH). (2017) Guidance on the use of auto adrenaline injectors in schools
  • Muraro, A., Hoffmann‐Sommergruber, K., Holzhauser, T., Poulsen, L. K., Gowland, M. H., Akdis, C. A., Mills, E.N.C., Papadopoulos, N., Roberts, G., Schnadt, S. and van Ree, R.& van Ree, R. (2014). EAACI Food Allergy and Anaphylaxis Guidelines. Protecting consumers with food allergies: understanding food consumption, meeting regulations and identifying unmet needs. Allergy, 69(11), 1464-1472.
  • Sanagavarapu, P. (2012). Don’t forget to pack my EpiPen® please: What issues does food allergy present for children’s starting school? Australasian Journal of Early Childhood, 37(2), 56-62.
  • Sanagavarapu, P. (2018). Experiences and support needs of mothers of children with food allergy during the transition to school. Early Childhood Education Journal, 1-12.
  • Taylor, J. Z., & Lewis, C. L. (2018). Counselling adults with food allergies after an anaphylactic reaction: An application of emotion-focused therapy. Journal of Mental Health Counselling, 40(1), 14-25.
  • Vale, S., Smith, J., Said, M., Mullins, R. J., & Loh, R. (2015). ASCIA guidelines for prevention of anaphylaxis in schools, pre‐schools and childcare: 2015 update. Journal of paediatrics and child health, 51(10), 949-954.
  • Walsh, J. (2017). NICE food allergy and anaphylaxis quality standards: a review of the 2016 quality standards. British Journal of General Practice, 67(656), 138-139

Philippa Thompson

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