How to cope when your baby has anaphylaxis

This guest post has been written by Josie Harrison, Mum to Bill who has allergies that result in anaphylaxis.

Both of my two boys were born extremely premature two years apart. As a Mother I am no stranger to sitting next to a hospital bed hoping and praying that everything will be OK.

Bill, my youngest was given the nickname ‘Willful Bill’ by the nurses which still suits him today. His stay on the neonatal unit was pretty straight forward in terms of his prematurity but he did sometimes suffer from a few skin issues and tummy troubles. I remember one occasion where I gave him my breast milk following a curry and it didn’t sit well with him at all, I joked that maybe it was too spicy for him.

After 9 weeks we were allowed to take him home. My pregnancy craving of chocolate peanuts had reduced but peanut butter had become a firm favorite for me and my eldest. Bill often had eczema and scratched at his scalp so frequently he almost always wore a hat. He was re-admitted to hospital often with breathing issues which was put down to a viral induced wheeze and even a suspected allergic reaction to antibiotics.

At 9 months I decided it was time to give Bill his first taste of peanut butter on a crumpet. This was not without reservation, I just had a feeling in my bones that he was allergic and I had even checked with one of his consultants at the hospital if I should proceed. Very soon after he had his first bite all of my fears were realized. Little hives appeared around his mouth and started to spread all over his body, he started coughing and vomited all over the floor.

I ran and got his blue inhaler and gave it to him and he seemed to calm down a bit so I fetched my phone and rang 111 in tears. While I was on the phone he vomited again, the hives were getting bigger and more widespread and his breathing wasn’t great. An ambulance was called by the operator and thankfully it arrived quickly. The paramedics were familiar, they had been out to us a few weeks earlier when Bill had seemingly stopped breathing for a few seconds and gone blue in the lips and tongue. They were relaxed, assessed him and didn’t seem too concerned but said they would take him to the hospital to be on the safe side.

In the back of the ambulance Bill started screaming and frantically clawed at his head until he drew blood followed by a gasping noise and suddenly everything changed. Adrenaline was measured and given via a syringe, it was radioed through as an emergency and we were blue lighted to A&E. Once there Bill was rushed to adult resuscitation, pads stuck to his chest for heart monitoring, an oxygen mask stuck to his face and further emergency medication given (adrenaline, antihistamines, nebulizers, steroids). Bill’s skin went so red it looked like he had been burnt all over his body.

Eventually once things had calmed down we were wheeled round to children’s ward for 24 hours of monitoring. A crash course in anaphylaxis management followed along with JEXT pens before being told we could go home. Scratch tests and bloods a few weeks later confirmed what we already knew and we were told this was very likely going to be a life-long issue and the only way to keep Bill safe is to practice complete avoidance of peanuts and nuts. I was a mess and I’m not going to lie it has taken a long time to find a new normal.

To build my confidence I even arranged a first aid course for friends and family. Bill has had 2 incidents since that have required his JEXT pen. There was no known cause and after tests were inconclusive ‘idiopathic anaphylaxis’ was diagnosed. For a period of time going anywhere with him filled the whole family with massive anxiety. He has had episodes of random hives and breathing issues but daily antihistamines, Montelukast and a steroid inhaler were prescribed which have helped.

Lentils became an issue 2 years later when Bill ate a casserole at nursery and immediately came out in a rash around his mouth which went away after Piriton. We never suspected he might be allergic to peas until I started keeping a food diary which helped me to match them with the frequent symptoms of spots around his mouth, facial flushing and breathing difficulties. Bloods confirmed a raised IgE for both and we were advised he shouldn’t eat them again and to watch out for pea protein in things like sausages, burgers and even chicken nuggets.

We are now a few years post the initial anaphylaxis diagnosis and are more confident in what we need to do to keep Bill safe. We help him to practice complete avoidance which includes him not consuming any products labelled may contains. When supermarket shopping we check every label, every time, and tend to buy the same tried and tested foods and cook a fair amount from scratch.

We don’t want him to grow up being afraid and want to teach him how to manage his allergies so we do eat out. When doing so we check the menu in advance and would never visit anywhere with peanut butter or loose nuts on the menu as the risk of sticky hands and cross contamination is too great. If we are eating in an unfamiliar, maybe more independent place, we have emailed or telephoned ahead for reassurance in the past. Every time we place an order we always mention the fact Bill is allergic no matter how frequently we visit, this reminder stops anyone getting complacent and Bill copies us so now, aged 4, sometimes tells people what he is allergic to himself. The recent press surrounding life threatening allergies has really raised awareness and we have found that most places want to cater for you. If we are told “we have allergens in the kitchen so can’t 100% guarantee that the meal won’t contain them” we generally walk away and then don’t revisit.

When it comes to travelling we try to research as much as we can in advance but that isn’t always possible so risk assessment is key. Basically any time I am with Bill I scan the environment looking for potential issues. I have made peace with anxiety, it actually keeps us safe and if something doesn’t feel right we walk away. It sounds exhausting and sometimes it is but now it is mostly second nature. My son wasn’t with me the other day when I spotted a rogue peanut on a path in the school playground (probably dropped by a bird). Most people wouldn’t have seen it or given it a second thought but constant vigilance is now my middle name.

As yet we haven’t been brave enough to travel abroad but have enjoyed many, many happy family holidays in the UK. We favour Centre Parcs, CBeebies and Splash Landings Hotels, Haven and private holiday lets. Bill is currently a huge fan of Star Wars and I know he, my eldest and my husband would love to visit Disney. If I’m honest I’m not brave enough to entertain travelling abroad at the moment but am taking baby steps to educate myself by talking to those with life threatening allergies who have done it.

If you’re reading this and are newly diagnosed or have a child who is please know that are not alone. Something I have discovered is that social media holds a community of strangers who are ready to help you by offering support, advice and encouragement. It has been invaluable to me at times, especially when my mental health has suffered.

I have a blog called The Fun Mum which I often use it to help to raise awareness for anaphylaxis. Friends have told me posts I have written have made them more allergy aware and resulted in them making changes to help keep others safe which is amazing.

Education is everything. Constant vigilance. Just keep swimming!

Guest post by Josie Harrison

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