Who am I? Where am I? Why do I feel this way?

To answer two of Jesus Jones’ three key questions…

Who am I?

My name is Louise. I am mum to a 2-year-old boy, D (who has a severe peanut allergy) and 9-month-old girl, C (who has no known allergies as yet).

Why do I feel this way?

Why have I decided to start a blog about nut allergies? Well, in April 2012, when my son was 20 months old, he had an anaphylactic allergic reaction and spent four days in intensive care.

This blog is where I will write about how my family has adapted and is trying to manage his allergy.  I have no medical background or qualifications and everything I say on this blog comes purely from my experience as a mum to a severely allergic child. I hope the blog will be a place where I can share my experiences and also hear about my readers’ experiences and coping tactics too. It is early days for us and we are still learning about D’s allergy. I certainly don’t have all the answers and am not attempting to give advice.

My son’s anaphylactic reaction

So, to explain in a little more detail what happened to D. On Monday 30 April 2012, whilst visiting his nana in Nottinghamshire, D ate a peanut butter cookie, triggering an immediate extreme allergic reaction. His lips swelled up. He used the hand that had been holding the cookie to wipe his eye, which swelled shut. He went into anaphylactic shock, with his breathing becoming loud and wheezy. Fortunately, his nana is a retired nurse and recognised the signs of anaphylaxis. She called 999 and luckily the early response paramedic got the adrenaline injection to him within minutes.

He was initially taken to hospital in Mansfield. Here they put him in an induced coma, as they needed to put a breathing tube down his throat before it swelled closed. On Monday evening, he was transferred by emergency ambulance to the paediatric intensive care unit (PICU) at the Queens Medical Centre (QMC), Nottingham.

He spent Tuesday and Wednesday in PICU, on life support, whilst the doctors waited for signs of a “trickle” around the breathing tube. This would show that the swelling in his throat was subsiding and would allow them to remove the breathing tube.

Thursday: he came out of intensive care and was transferred to the children’s ward at Macclesfield hospital.

Saturday: he was discharged.

Sunday: he was home playing with his Duplo and watching CBeebies.

We know that we were incredibly lucky and that, had there been any delay in calling 999 or any hold up with the early response paramedic, it could have been a very different story.

By Sunday, to look at D, you would not guess what had happened to him during the previous week. However, the whole family’s lives had changed as a result of this episode.

I think maybe something kicks in, to sort of carry you through whilst your child is in hospital. My daughter, C, had been born five weeks premature and had needed to stay in hospital for a fortnight after her birth. She was only four weeks old on 30 April. So C and I had stayed at home near Macclesfield,Cheshire whilst my partner, Ian, took D to visit his mum near Mansfield, Notts. I had also had a c-section, so was unable to drive in those first few weeks. So, when D was taken ill, I was 50 miles away, with a premature newborn baby and no transport.

Fortunately, as the QMC had accommodation rooms for parents of children on PICU, Ian was able to stay there 24/7 with D, whilst C and I moved into a nearby hotel. By the time D was discharged, we were all exhausted but obviously very relieved and grateful to all be home.

What happens next…

Whilst D was in hospital, we were only too aware of the gravity of the situation and how close it had been. However, it was really only after after he came home that the full day-to-day implications of his allergy began to dawn on us.

What on earth could we feed him? What would we do about nursery? Children’s parties? Would he ever be able to go to a restaurant? On holiday? I resolved there and then never to let him go backpacking outside the US or EU…

I hope to discuss some of these questions in this blog. I will let you know what issues we have faced and what we did, and I would really love to hear from you with your experiences and tactics for handling your child’s severe food allergies too.

2 comments

  1. Do you feel comfortable commenting on your son’s IgE score? My daughter had an anaphylactic response to egg and then later tested positive for an allergy to peanuts as well (but luckily not tree nuts – although we often avoid those too because of how nuts are processed). My daughters peanut IgE went from 4.8 at 12 months to 37 at 18 months. She’s never actually had peanuts. I’ve also read that IgE’s can report a false positive (although I’m not going to test it & she has definitely had two anaphylatic responses to egg & she definitely isn’t allergic to tree nuts according to the IgE). I’ve also been advised that IgE score has no real relation to whether a response will be anaphylatic – but I’m wondering for children that definitely have an anaphylatic response – what their IgE score is. Thanks,

  2. Hi Louisa, thanks for the message – I would be comfortable commenting on the score, but unfortunately I don’t know what it is! My son’s had skin prick tests at his allergy clinic. If you like, I can repost your question on the Nutmums facebook page, and see if any of the parents on there, whose children have had an anaphylactic reaction, can share their child’s score? Just let me know if you would like to do that – http://www.facebook.com/nutmums. Louise

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