In this anonymous blog, the author draws on her son’s experience of glandular fever to highlight the value of listening to parents, in order to reduce avoidable harm.
Three years ago, my then 11-year-old son developed a slightly swollen eyelid. The first out of hours GP diagnosed an allergic reaction and prescribed anti-histamines; the second diagnosed an eye infection and prescribed drops. Within days, he was admitted to hospital, his face completely unrecognisable.
On admission, I suggested that he had glandular fever. I had done that frowned upon thing that patients do; my own research. A Google search had led me to the conclusion that the most likely explanation was periorbital oedema, a less common clinical feature of infectious mononucliosis.
Four consultants disagreed with me, as the classic triad of fever, pharyngitis, and lymphadenopathy were not present. In the early hours of one particular morning, the ward sister suggested I stay off Google.
I cannot fault the level of patient care that my son received by the nursing staff. He was given IV amoxicillin and after a 5-day hospital stay, he was allowed to continue treatment from home as an outpatient.
He soon developed a horrendous scarlet fever like rash and once again, I began desperately researching, as my child writhed on the floor in agony. It turns out (according to the collective intelligence of Google) you must not give amoxicillin to patients who test positive for Epstein Barr (EBV) - the virus that causes glandular fever. I drove him straight to the GP surgery, who requested that he be readmitted to paediatrics and tested for EBV. He tested positive.
After another stint in hospital, followed by weeks of home treatment, the rash eventually calmed down, but it took a couple of years for his body to recover fully. He suffered from extreme fatigue, lost a lot of weight and was more susceptible to other viruses – a year later a chest infection put him back in hospital. He missed a lot of school, through prolonged absence followed by part-time attendance, and was unable to play sport - losing his place on the City youth football team.
In the majority of cases, parents will be the greatest experts in their children’s health. They will have the greatest knowledge of their child’s symptoms and the greatest motivation to research potential explanations.
My son’s example is one of many highlighting the risk involved in dismissing the parent’s voice. This is compounded by some clinicians having the arrogant assumption that they know all there is to know – creating a dangerous blind spot when it comes to keeping patients safe.