Unprecedented AEFI
My toddler had an acute onset of an incredibly rare neurological condition in conjunction with her 18m immunisations.
To be clear, it was a preexisting condition, but it was insidious as an infant, so I had no idea until 18m.
Her condition is incredibly complex and multifactorial, she has an atypical feature of immune mediation, which is why we saw the temporal association at 18m. She was recovering from Covid at the time of her needles, so experienced immune activation, with paroxysmal symptoms being extremely exacerbated.
This overlap led to many heuristic failures of vaccine allergy, cognitive bias against me when I insisted a vaccine allergy could not explain her symptoms, it led to delayed care, imaging and diagnosis. It was truly a nightmare - something was clearly very wrong and continued to happen, yet they kept telling me it was just a mild vaccine allergy. I was able to identify her condition within one day, they thought I had factitious disorder because it was “too rare”, it took over a year to be formally diagnosed. I had to fight to even see vaccine immunology, they falsely thought I was an antivaxxer for insisting she had a rare disease, even though I was right.
The hospital have been awful and are still denying her care and investigations despite extensive complex symptoms unlike any neurologist or other specialities have seen. We’re now having to travel to another state to see specialists who know she’s been profoundly failed and to diagnose additional serious conditions that have been ignored.
I’ve been advocating for her for 2.5 years, and it’s been confirmed to be an unprecedented AEFI by a national regulatory body, I know there was no causation but her symptoms certainly became so much worse after immunisations, however she has had no immunological workups to date, nothing beyond one face to face meeting with infectious diseases 2.5 years ago.
My question is, why is it so difficult to get interest in her case from a research perspective? I’ve been able to speak with one of the head vaccinologists in the country who agrees her case is extraordinarily atypical, but does fit in with exacerbations of other autonomic conditions from vaccines.
I’ve found multiple other parents of children dx with this condition who have experienced exacerbation with immunisations, but their condition was already known. So my daughter’s healthcare was harmed because her first acute onset happened in conjunction with her vaccines, leading to misdiagnosis of vaccine allergy.
Her condition can be life threatening, so I firmly believe there needs to be literature written so no family ever has to go through this cascade of heuristic failures like we have.
I just don’t understand how this is an acceptable standard in such an abnormal case. The worst part is, the longer this goes on for, the closer I am to going public with our story, which would dramatically further harm trust in vaccinations, despite it not being causative and myself still being firmly pro-vax. I have lost faith in the healthcare systems that have abandoned my child.