Waiting for Consistent Treatment

“This is amazing reading the similarities in symptoms and issues (and the issues with Dr’s and diagnoses) but the variation in treatment and advice given is scary.”

This post was written by an ANE Dad and sums up the lack of knowledge and variation regarding ANE and treatment in real case scenarios.

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There have been no recommended therapies for ANE thus far. Intensive care, symptomatic treatment and empirical treatment (antiviral therapy), and immunomodulatory agents were tested in a majority of cases . Due to the pathogenesis of ANE, mainly the hypercytokinemia secondary to variable viral infections through immune-mediated mechanism, the immunomodulatory therapy, particularly the therapy that suppressed the cytokine production, has the potential to improve the outcome of ANE. Intravenous glucocorticoids, immunoglobulin, and plasmapheresis should be effective on the basis of the pathogenesis of ANE . Among these therapies, intravenous glucocorticoids, including methylprednisolone and dexamethasone, were the most mentioned and studied, although empirically without systematically determined. However, results from different studies were conflicting. Some researchers reported that administration of steroids within 24 hours after onset or at the early stage of the disease was related to a better prognosis in those without brain stem involvement . However, in spite of the severity of presentation and the late administration of steroids, good outcome was still found in some patients, and some researchers suggested that a trial of steroids should be given to all patients with ANE . Another study, on the contrary, reported that ANE patients treated with steroids had a poor outcome . So far, there has been no consensus on whether we should prescribe steroids to patients with ANE, as well as the dosage, timing, and the duration


As you can read in this excellent article the treatments and knowledge of ANE is bewildering to parents (and probably to physicians whom ANE treatment seems to be a hit & miss affair). Research and a collaborative collection of ANE cases, treatments and outcomes would go a long, long way to helping ANE patients.


#ANEandUs  #AwarenessDay #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers #brain #influenza #flu  #vaccine #FacesOfANE #ANEandMe #FairForRare #NotJustTheFlu


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