newbie

[Fluffy2022]

hi all,

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.. 😞

[Paula-38]

Hi Fluffy2022Welcome to this forum!

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.

[TeamEncephalitis Administrator]

Hi Fluffy2022

Please do reach out to our experienced support team if you haven't already as they may be able to help - [e-mail] or [phone] (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 [e-mail]

Have you seen our Children's Guide? This might be helpful if not - encephalitis.info/encephali...

You definitely aren't on your own, please reach out if you would like some further help.

Take care