Sarah O’Toole, Oliver’s mum, reflects on her son’s allergy journey
Oliver was our first baby—an IVF baby—born in March 2020. His arrival was difficult, and just two weeks after we brought him home, the country went into lockdown due to the COVID-19 pandemic. The isolation of that time made the challenges we faced even harder.
Although Oliver was born on the 75th centile, his weight rapidly dropped below the 9th centile. He was constantly sick, had explosive nappies, and could only sleep upright. His face was often swollen, and his eczema was severe. He was diagnosed as failure to thrive, and we were assigned extra weight checks. But, due to pandemic restrictions, these visits often consisted of a health visitor standing on our driveway while we attempted to weigh Oliver ourselves.
As I met other new parents, I realised Oliver was far sicker than most babies. With GP appointments nearly impossible to access, we found ourselves in A&E multiple times—seeking help for his severe sickness, discomfort, or peeling skin. Time and again, we were told his eczema was severe and that he needed to see a dermatologist, but we faced an NHS waitlist of over 18 months.
Desperate for answers, I started researching. I noticed a pattern—Oliver’s symptoms worsened after I consumed dairy and breastfed him. When I raised my concerns with the GP, I was told a dairy allergy was unlikely and that it was probably a lactose issue (this is incorrect advice) and I was advised to buy a lactose free formula and prescription formula was denied.
Meanwhile, Oliver’s reactions became more concerning. If his dad kissed him after having milk or wheat, he would break out in rashes. Despite this, we struggled to access medical support. A dietitian eventually prescribed a hydrolysed formula, but because it still contained dairy, Oliver refused it—screaming in pain every time we tried.
Struggling for answers, we paid for an online private consultation with a paediatrician, who finally provided an eczema treatment plan and advised us to avoid dairy and soya.
Following the advice of the dietician, we introduced other allergens into Oliver’s diet at five months. Within 30 minutes of eating less than a pea-sized amount of peanut butter, his face swelled, hives spread across his body, and he developed wheezy crying. We called an ambulance, and Oliver was rushed to A&E.
One doctor immediately referred him for allergy testing, but another tried to stop it, saying we had been to A&E many times and that his reactions were non-IgE. Yet, Oliver had never been tested for allergies. With some advocacy on my part, the referral went ahead, and the results confirmed what I had long suspected—Oliver had multiple severe IgE-mediated food allergies, with an extremely high total IgE level.
Frustrated with the lack of NHS support, we sought help from a private paediatrician. He advised that Oliver needed an amino acid formula—one without milk proteins, prescribed epi pens and placed an urgent dermatology referral through.
We had to purchase the first two tins of amino acid formula which cost over £70 before the NHS referral for prescription milk went through. At just five months old, his only source of nutrition was milk, and yet the GP initially prescribed just one tin per month. That tin lasted two days. We had to visit the GP in person, show them the tin, calculate how many bottles Oliver needed per day, and prove that the prescription was insufficient.
Oliver was eventually referred to Guy’s and St Thomas’ Hospital in London—a decision that changed our lives. Under their care, Oliver finally had access to a dermatologist with an effective treatment plan, an allergist for support, skin prick and blood tests, and a dietitian who supported us in managing his nutrition. For the first time, we felt like we had a team who understood his needs.
Despite specialist care, the challenges haven’t disappeared. Oliver recently had a reaction requiring his EpiPen. His allergy plan states that a persistent cough is a sign to administer adrenaline. Yet, when the ambulance arrived, the paramedics told me that a cough wasn’t a valid reason to use an EpiPen. When we arrived at A&E, the focus was on how the adrenaline might have increased his heart rate—not on his allergic reaction.
The lack of understanding of signs of anaphylaxis is worrying, especially when the care of your child is in other’s hands. Oliver recently had a persistent cough at a school holiday club (held at the nursery he used to attend) and the staff were not aware that a persistent cough can be a sign of anaphylaxis. The staff said that this was never highlighted as a sign in anaphylaxis training.
Throughout this journey, I have often felt alone—forced to rely on my own research, online forums, and support groups. The lack of consistent, informed healthcare guidance makes managing allergies overwhelming, especially for parents new to this world. We are incredibly lucky to be under the care of Guy’s and St Thomas’, but I can’t help but think about all the families still fighting for the right care.
Our story highlights the misinformation, delays, and barriers that parents of allergic children face. From struggling to get a diagnosis to fighting for the right prescriptions, the system makes an already stressful situation even harder. Parents shouldn’t have to battle for life-saving medication or be dismissed when advocating for their children’s needs.
This is why reports like the NCMD’s review of child deaths from anaphylaxis and asthma are so important. They provide clear evidence on risk factors, highlight systemic failings, and empower parents to push for the right care. No family should have to navigate this journey alone, and no child should be put at risk due to gaps in understanding or policy.
Oliver’s story is not unique, but I hope that by sharing it, more parents will feel empowered to advocate for their children—and that healthcare systems will take the necessary steps to improve allergy care for all.