Our Story with ANE
originally written in English
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3rd August 2017
The Neurologist looked at us and said, “What your daughter has is called Acute Necrotizing Encephalopathy”. I thought to myself, “Necrotizing.... that is a really bad word”. In December 2002 our youngest daughter was 11months old, a happy, healthy baby. Over the course of about 4 days she showed symptoms of the flu with a slight cough, runny nose, which progressed to diarrhoea, lethargy, loss of appetite and then she refused liquids. We had 3 visits to our local Dr’s who diagnosed flu. She had temperatures but these were controllable with paracetamol. Finally on the third Dr’s visit he recommended we take her to the ER. She was admitted and we were transferred to the children’s ward, our girl now developed a rash. She remained stable the first night and the next day. The 2nd night suddenly she started having major tonic/clonic seizures; it was over an hour before the staff got them under control.
Immediately we were transferred to a major Children’s Hospital. Here our beautiful girl remained in isolation, unconscious for 3 days. She had no further seizures. Her recovery when she finally started to wake was really quite rapid. Testing done whilst in hospital was a CT scan that showed nothing abnormal, blood work that gave no indication of a particular virus, a Lumbar Puncture that showed elevated protein and finally an EEG that showed brain slowing. It did take her 3 weeks to relearn how to crawl. Diagnosis on discharge was MeningioEncephalitis of unknown cause.
Fast forward to September 2015, our girl was now 13. She came home from school complaining of a sore throat and headache. The next day she felt flu like still, continuing to have a sore throat and sleepy with persistent headache. The next afternoon her sore throat and headache were intense, and we went to the GP. Whilst being examined, she passed out. Straight to the hospital, Influenza B was diagnosed and we were sent home. The next day I had to wake her, she had double vision and a sore neck, back to the hospital, she was slightly wobbly on her feet and was showing signs of anger, after examining her, the Dr said still just the flu. We left the hospital and were literally 1 min down the road when she passed out again, gagging, woke up and threw up. I immediately turned and went back to emergency, where they finally admitted her.
By the evening, her speech was slurring and her conversations were a bit jumbled. Finally in the afternoon an MRI was performed. She was put on steroids and anti seizure medication immediately, the palsy which had affected her tongue and then speech had now caused her left eye to droop and her mouth. She had weakness down her left side and became more confused. A Lumbar Puncture was performed. We were told at this point that yes, she had Encephalitis. We were shown her MRI which showed many brain lesions.
The next day she was transferred by Care Flight to a major children's hospital. This was when the Neurologist told us her diagnosis from MRI and the lumbar puncture was Acute Necrotizing Encephalopathy. She was hallucinating at this time. She had no internal organ dysfunction. Over the next few days she remained stable, she could walk with people either side of her to stop her from falling, and her speech remained very slurred. She was unable to use her fingers on either hand and had sensory loss in her left hand. Her whole left side was weak. Her eyes were unable to track and still seeing double. At times she spoke to me like she was still only 2 or 3 years of age.She would have anger outbursts and yelling episodes. Her MRI showed extensive bilateral changes within the thalamus, external capsule, insular cortex and anterior hippocampus as well as multiple brain stem regions. Her CSF again showed elevated protein and EEG showed brain slowing.
I have learnt many things about ANE since then. Our daughter has the genetic mutation and will always be susceptible to another attack on her brain from any virus. She now has an Acquired Brain Injury. Her mutation is per novo meaning it was not inherited. She was very lucky and in the 1/3 of ANE patients that has a good recovery. We have been told she is about the 7th case in our country. It is a lot to take in that your child has not only an ABI but a Rare Disease that can attack again at any time.