What is happening to my son?
He was born 5 weeks early, natural delivery, but the umbilical cord snapped before it was clamped and he lost a lot of blood. He wasn’t as responsive as he should have been. He was taken to the Special Care Baby Unit, required a blood transfusion and given antibiotics.
He suffered with eczema as a baby. We tried numerous creams, lotions and medications. I remember one doctor looking at him and saying “he’s an atopic baby” – I had no idea what that meant and asked how she could tell. She replied, “the skin around his eyes and eyelids is quite translucent, his veins are very obvious and he has dark circles under his eyes”. Through all the routine medical appointments and then extra ones for the eczema, no-one suggested possible allergies of any kind.
His first allergic reaction.
At approximately 28 months old (2 years, 4 months), he had his first reaction after eating a very small amount of walnut. Red rings (erythema) appeared around his eyes, nose and neck. He was coughing violently. I had no idea what was happening and kept a close eye on him. The redness and coughing slowly subsided that day. At that stage, we were not aware of anyone in my or my husband’s family that had/have food allergies. I knew very little (if anything) about allergic reactions and anaphylaxis.
Trying to get a diagnosis.
At approximately 31 months old (2 years, 7 months), my husband kissed our son on the forehead and a red rash quickly appeared. My husband had eaten chopped nuts (including walnuts) in a salad and had finished eating 10 minutes previously. I saw our GP and a referral to our local hospital Paediatric Outpatients was made.
The first blood test (aged 34 months – 2 years, 10 months) showed positive reactions to a variety of nuts (Grades 2 and 3). I was advised by the Paediatrician to err on the side of caution and avoid giving any nuts (including peanuts, even though the reaction to peanut was negative and Grade 0). I specifically asked about the prospect of my son being anaphylactic and if we would need to carry epi-pens. I was advised that this was not necessary, and my son was discharged.
A reaction abroad!
At 36 months old (3 years), we were at a family function abroad. My son mistakenly ate a very small piece of cake (2cm-3cm) that had a very small amount of chopped walnuts in it. Within minutes he was complaining of his tongue hurting and his speech was difficult to understand. I initially thought he had bitten his tongue. However, it became quickly clear that his lips and tongue were swelling and he was pointing to his neck and coughing. A red rash began across his face. Welts also appeared. I realised that he had eaten walnut and rushed him to hospital whilst keeping an eye on his breathing.
The red rash and welts became more aggressive. I distinctly remember the rash and welts spreading down his body – face, chest, arms, stomach and legs. It was awful to see. He was only 3 years old and couldn’t understand what was happening. The doctor was trying to give an adrenaline nebulizer, but it was difficult to keep the mask on my son’s face. He was exhausted, lethargic and really annoyed. I remember asking if it was ok to allow him to sleep (as I wasn’t sure if he needed to be kept awake or not). The doctor advised that falling asleep would be helpful as my son would relax and allow the oxygen mask to stay on his face.
I was sat on a hospital bed with my son on my chest, rocking him to sleep whilst holding an oxygen mask over his nose and mouth. It took a few hours, but I watched the welts and redness slowly subside. When he woke, he was “groggy” and slightly disorientated but otherwise ok. We had to stay in overnight for observation and were not allowed to be discharged until I was given epi-pens and shown how to use them. I was also advised that should we ever need to administer an epi-pen, it was important to call for an ambulance first and then administer the epi-pen. They said this was precautionary as my son could react to the epi-pen and it would be better if medical help was already on the way. I have subsequently been advised that this is not the case.
When we returned home, I asked the GP for another referral to clarify my son’s allergies. Further blood tests showed “higher” readings. The Paediatrician stated that as they were so high, skin prick testing would be considered “child abuse” and blood testing would be continued.
Dealing with nursery and school.
Once we knew how serious his allergies were, selecting the most appropriate nursery/pre-school became more complicated. I met with the nursery manager and staff on numerous occasions to confirm their procedures and spent time volunteering at sessions so that I understood exactly what went on. My son would take in his own food for snack times and the nursery were very good at ensuring there was no exchanging/sharing of food with other children.
The start of primary school raised the same anxieties. Whilst the school was declared “nut free”, I was well aware that if allergies are not part of your life directly (for yourself or someone you know), you are unlikely to be constantly aware of potential dangers for allergy sufferers. I understand this as it used to be me.
As a result, I ensured I attended every school trip as a “parent-helper”. Given my son’s allergies, the teachers felt a little more relaxed that I was present, should anything happen. Even though announcements and reminders are given on a regular basis, there have been a number of occasions where nut products have been included in snacks and packed lunches for the school trips (as well as normal lunches at school).
The proposed 2-night school residential involved a lot of research and planning. I spoke with the venue a number of times and requested information around policies and procedures via email. I clarified the location of the nearest A&E hospital and how long it would take to get there from the venue. I ended up staying at a local hotel in order to be nearby, should there be an emergency. Thankfully, everything was ok and our son came home having had a wonderful time.
My constant anxiety.
I live in constant anxiety about receiving a phone call from the school and being told that something has happened to my son. The school are very good at immediately saying “Hello Mrs. X, nothing to worry about but…”
It does sometimes feel like you are living in a state of on-going hyper-vigilance, not ever really being able to relax unless you have total control of the environment.
I have never left our son at a birthday party or play-date. I do not feel able to hand over responsibility of a child with anaphylaxis, provide an epi-pen and leave. Foods containing nuts have continued to appear at parties and I cannot take the risk (for eg. Nutella sandwiches on the same platter as ham sandwiches). I have always taken some food to parties “just in case” he cannot have what is being offered. Our son has never had a sleep-over at a friend’s house.
In all honesty, I really don’t know what other parents think about my requests and regular reminders. Sometimes I feel like a neurotic mother, constantly over-worried. Other times I remember that emergency trip to hospital – the rash, the welts, the swelling – and I think I can never be neurotic enough.
Travelling (within the UK and abroad) requires more planning, more research, more organising. We have been on flights where they have continued to serve peanuts/nuts and had no alternative snack to offer our son. We had a close call during a trip abroad where the butterscotch ice-cream contained cashews. Our son had the smallest bite and complained of his mouth, tongue and throat “feeling funny”. We gave him antihistamine, watched him closely and then watched over him while he slept until we were certain his reaction was subsiding. Thankfully we avoided another emergency.
Why does my son have allergies?
Reflecting back on my pregnancy – I read as many baby and parenting books as I could. I attended ante-natal classes and absorbed all the information they provided. I remember advice around foods that pregnant women should avoid eating but I cannot recall ever reading or being advised about allergies and anaphylaxis. I clearly remember the advice and information around a meningitis rash, but not allergies. It would be great to know that this is being taught/advised in all ante-natal classes, especially given the rise in allergies over the years.
My son’s last blood test was done aged 7. As there was no “improvement” in the readings, my son was again discharged from Paediatric Outpatients. I was told that there is very little chance my son will grow out of tree nut allergies. I was advised to always avoid all nuts and ensure we always have epi-pens available. We haven’t been referred to an allergy specialist or had any further medical input since he was 7 years old.
What does the future hold?
With adolescence looming in the not-too distant future and the increased risk associated with teenagers (becoming more independent), the parental worry and concern feels as though it’s increasing rather than decreasing. My 11 year old son vividly remembers the hospital stay when he was 3 years old – I’m not sure he will ever forget it.
Over the past few years, I feel as though there is more awareness and understanding about allergies, but there is still a long way to go.