Elise became poorly in April 2016, just with a high temperature, the normal viral symptoms and the Dr’s told us it was tonsillitis.
Then she deteriorated after days, she slept all the time. I knew straight away something was very wrong. When she became limp and couldn’t walk or stand. She was then incontinent. The Dr’s kept telling me she’s still very young, I had to force them to listen to me as she hadn’t needed nappies on since being toilet trained at from when she was 2 years old.
They then tried sending us home chich I can’t even imagine what ould of happened if I had taken their word for it. I was not moving from the hospital until I had a second opinion. She then was transferred to the RVI in Newcastle where they listened to me and was seen by all the best Dr’s. Wlise went for MRI scans and had a lumber puncture. It was then they realised how poorly she was, with inflammation on her brain. She was being treated for meningitis amongst other things. The blood tests came back after a while saying encephalitis.
Once she was better, we were told she has a genetic disorder caused by a mutation on the RANbp2 and a condition called ADANE, (Autosomal Dominant Acute Necrotizing Encephalopathy – genetic ANE).
It’s still so confusing and hard to understand. Now she’s better, I’m starting to ask more questions. She’s amazing! She’s now walking, talking, back to her funny little self and in school full time. She gets really tired and has to be up to date with her flu vaccines and prevnar 13 injection, to keep her away from infection, in case……it happens again – I’ve been told that it could.
Disclaimer: The information in this website is intended as a general information/ discussion guideline only.It should never be construed as medical advice.For further information contact your local health care provider.If you have any questions regarding health concerns, seek medical assistance from a qualified health professional. ANE International Incorporated – No. 2673652 (New Zealand)