Anaphylaxis aftermath: what happened once our toddler came home from hospital

I recently read a blog post by a mum whose 4 ½ -year-old son had an anaphylactic reaction to sheep’s milk feta cheese. Thankfully, he was okay. However, his mum had described, two weeks on, how the family are dealing with the experience and some of the things they have learned.

Much of the article rang true for me, particularly the need for parents to give themselves time to recover emotionally and physically from an anaphylactic episode. My son, D, was 20 months old when he suffered anaphylaxis after eating a peanut butter cookie (for more details, see Who am I? Where am I? Why do I feel this way?). At that time, D was only at the stage of speaking in single words (save for the phrase “bye bye baby”, which he had taken to muttering repeatedly since his little sister’s arrival the previous month!). So we didn’t experience the problem of trying to get him to talk about what had happened, as you might with an older child. However, the article got me thinking about some of the issues we faced, which I imagine might be common for toddlers who have been hospitalised.

Fear of ambulances

Once, when we were out shopping in the weeks following his reaction, D suddenly started crying in his buggy, for no apparent reason. He arched his back, turned his face into the buggy and kicked his legs. I wondered what on earth the matter was, until I saw an ambulance parked further down the road, which he had spotted before me.  Another time, there were tears when we were stopped at traffic lights and an ambulance pulled alongside us. On both occasions, the tears subsided once the ambulance was out of sight.

I think these incidents happened during the first two-three weeks following his discharge from hospital. Certainly, by the time of his ambulance ride following an asthma attack brought on by croup (about seven weeks post-anaphylaxis) (see What a pile of croup: the false alarm), the ambulance terror had subsided.

Fear of nurses and paramedics in uniform

For a while, the sight of a uniformed nurse or paramedic would mean tears. This white coat syndrome began when he was out of intensive care but still in hospital, and continued at least until the first hospital allergy appointment for skin prick tests (so about six weeks post-anaphylaxis).

Fear of sleeping in a room by himself

After his anaphylactic reaction at Monday lunchtime, D was in intensive care Monday evening – Thursday morning, then in a room on a children’s ward for the remainder of Thursday until Saturday.

I hadn’t seen an intensive care ward prior to D’s allergic reaction. It was a very busy environment. Whilst he was on life support, D’s bed was constantly surrounded by doctors and nurses (plus his visitors, trying to not to get in the way!). Once he was transferred to the children’s ward, although he had his own room, he had visitors during the day and Ian stayed with him overnight.

So, when we came home, he was suddenly terrified of sleeping in his room by himself at night. For the first couple of nights, Ian slept in the same room. We then moved on to sitting with him until he fell asleep and attempting to tiptoe out of his room, but he inevitably always stirred just as we were creeping out of the door. After a few nights of zero sleep (his little sister was five-weeks-old at the time and feeding frequently), we ended up having to adopt Supernanny-style tactics and do controlled crying.

It was extremely hard to be stern, given what he had been through. However, the controlled crying worked quickly and normality started to return. Saying that, nearly one year on and he still won’t go to sleep with his door closed (something that was never an issue before his hospital stay).

Group for parents and allergic children?

One of the suggestions from It’s an Itchy Little World is to connect with other people in the same boat, for example by joining a support group or starting a playgroup for children with food allergies.

Inspired, I am certainly planning to look into:

  • Setting up a playgroup for allergic children, which meets, say, monthly, and also doubles as a parents’ support group. If you live in the East Cheshire / South Manchester area and this is of interest, please do drop me a line through the Contact page.

Update (September 2013)

I now regularly attend the Manchester Allergy Support Group. For details of the group’s forthcoming meetings plus links to posters and organiser Michelle Byrne’s contact details, see the Events page.

2 comments

  1. Thank you so much for sharing our family’s story and yours as well! Going through anaphylaxis is so difficult, so it’s great to have a good support network for both the parents and children to make it though the experience. I hope you find some wonderful parents to connect with!

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