#NotJustTheFlu – A Typical Account Of ANE and The Emergency Experience

18193999_10155292350358653_8866037061378516430_nMy 7 year old daughter was in hospital with ANE after suffering from influenza A. She had seemingly usual virus symptoms and was ill off school with it on Monday but by late afternoon her temperature quickly spiked and she was yelling out to me that her legs were hurting and told me to take her to the hospital. I thought she was over-reacting (as she often does about things) but took her to the emergency GP surgery, instead. She became lethargic in the waiting room and vomited on the floor there. And couldn’t stay awake throughout the Dr’s examination. Her temp was over 41 deg C and I was told it’s a virus, to take her home and give paracetamol and ibuprofen and if no improvement in a couple of hours, to take her to the hospital. After having the painkillers, she drifted off to sleep on the sofa and I waited for signs of improvement. Instead, she woke up confused and disorientated and hallucinating. Temperature still very high, I took her to the local hospital’s Accident & Emergency dept. She deteriorated quickly during the 4 hour wait to be seen by a Dr and it was only because she messed herself whilst waiting, but was too ill to even realise, that she was then seen. She drifted into unconsciousness almost the same time she was taken into a room for a Dr to examine her. Dr admitted her without delay because, besides everything else we had yet to have diagnosed, she was very dehydrated, with sunken eyes.
Drs all said she would wake up wanting her breakfast, the following morning, but I always had a feeling it wasn’t that straightforward. She was incontinent throughout the night, which began making Drs more concerned as to what might be wrong. She slept throughout, only to grizzle and moan, when they tried doing obs and wanted her to open her eyes to check her pupils. When they did manage to open her eyes the following day, to check, I noticed her left eye was turned totally inwards. I told the Drs and said that wasn’t normal; something was wrong. They said it might just be from where she’d slept so long as was tired. But I knew it wasn’t.
They then suggested a lumbar puncture, as they were initially checking for meningitis. But they cleared her of that. I can’t remember what the LB *did* show! Over the next few days (her still asleep and resisting them opening her eyes to check her pupils) she had an EEG and then an MRI. From the MRI they diagnosed encephalitis (after liasing with paediatric neurologists in **** hospital) and said they were waiting for a bed to become available at *******, as they had special care for her, there, not provided at the local hospital.
The following morning (5 or 6 days following initial hospital admission) she was transferred the 30 or so miles to ********’ Paediatric Intensive Care Unit, where her condition was changed to acute necrotising encephalitis. I can’t remember how long S**** slept for. It felt like eternity. Her vitals were always ok..though they had her on a barrage of treatment.. antivirals, Tamiflu, steroid, antibiotics, clonidine and chloral and she had an immunoglobulin transfusion. (May have been other drugs too during her time in PICU but it’s all a blur). When she did start to come round, she would thrash around in the bed so much, it made all of her skin very, very sore. They ordered in a special padded bed for her and a special circulating-air mattress, and even special silk sheets, to try and soothe her red and sometimes bleeding skin. S*** was always able to breathe without assistance and her obs were generally always good. Her temperature remained high and there was only one day I can remember, where I thought she was deteriorating and she needed an oxygen mask to be placed just beside her face on the pillow.

Read a full version of this recount at http://aneinternational.org/ane/sarah/

Many of ANE International’s members have very similar experiences on first presentation to Emergency Rooms. On International #ANEawarenessday we want to stop this from happening. Be aware of neurological symptoms in patients that present with viral symptoms. Vision issues are an early sign as is extreme lethargy, vomiting and incontinence.


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


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