My son who was at the time was 15 month was very I’ll with what the doctors assumed was encephalitis despite negative bloods etc. MRI scanned showed inflammation around the brain and the brain stem. He was treated with aciclovor and made great recovery. No follow up appointments since 2016 as of course to the doctors he was physically well.
He is now 8 years old and my goodness are we struggling with behaviour, emotional outbursts, difficulties at school. He is physically well and able but is struggling emotionally. I would love to hear from parents who have experienced similar. He is known to our local CAMHs as he struggles but this again was a battle. Any help advice please.. 😞
Written by
Fluffy2022
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I had encephalitis the day after my first birthday.
I suffered from paranoia, anxiety and Obsessive Compulsive Disorder -OCD. I was slower with my school work than others, and I experienced bullying. There were no such thing as CAMHS in those days 40 plus years ago, but I'm so pleased that the service is now available for your poor son.
My story is on the Encephalitis Society website under Your Stories, and I have put up a lot of different posts on here you might want to have a read of them too.
Please feel free to ask me any questions anytime. I'm more than happy to help if I can as I'm one of the Society's volunteers and I enjoy helping people.
Please do reach out to our experienced support team if you haven't already as they may be able to help - support@encephalitis.info or +44 (0)1653 699599 (open Mon - Thurs 9-5pm, Fri 9-4.30pm UK time).
We also run monthly virtual gatherings for parents whose children have experienced encephalitis if this might be something you would like to join to meet others who have gone through similar. If you'd like to know more about this please email laura@encephalitis.info
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Encephalitis recovery
NO END IN SIGHT
Progress Update
Do any E folks here have any idea what this means?
Has anyone had viral encephalitis turn into autoimmune encephalitis?? 
