From a Concerned Father.

[saleembhai69]

My name is Saleem Ahmed. This site has been God send.

I wanted to seek about my daughter. She is recovering from viral encephalitis (Herpes encephalitis). She is 15.5 years old and had been a good student in Grade 9. Its been 3 months since she was discharged from hospital. She also was diagnosed with Post Herpes NMDAR autoimmune for which IVIG treatment was also given (3 weeks since that was given).

Currently my daughter is overall ok - eats well, stable and does her daily tasks well. She has memory issues (not yet ready to join her school , struggling to remember tables ). She is able to sketch, paint, read and write well and responding to messages in social media and also watch tv series and movies (reading subtitles too).

The only behaviour she is displaying is that she is restless and paces in the house and shows little frustration/aversion towards one or two family members including her mother and cousin (though she obeys their asks albeit reluctantly). She is also not willing to do any task for long.

Doctors have said that such behaviour is due to her condition (and say it is sequilae of HSE) and will take time to fully recover and asked us to be patient.

Wanted guidance and support and comments on similar situations and experiences.

Would be grateful.

Anxious Father.

[Ocean96]

Hi Saleembhair69

I'm so sorry to hear your daughter has been so unwell.

I have had NMDAR Encephalitis too and I completely relate to several of the difficulties your daughter is experiencing. I would agree with your daughter's doctors (in relation to my experience) that these difficulties/behaviors are common post-encephalitis.

I'm so glad you have found this site. Have you been in contact with the encephalitis society for further supports? Here is a link for supports available - encephalitis.info/support

Remember, you are not on your own and there are people in the society that are there to support and understand you and your daughter!

As someone who has had encephalitis, the hardest thing I found was coming home - I found it hard to fit back into my previous life. However, I have learned to live alongside the difficulties I have faced post-encephalitis. Here is a fantastic fact sheet on the after-effects of encephalitis - encephalitis.info/Pages/Cat...

I'd say your daughter is feeling confused and scared right now as her brain has been through massive trauma. Is it possible to contact her doctor for further emotional supports? Counselling etc? Is she working with an occupational therapist etc? These are all things the encephalitis society could help guide you on!

Thanks so much for reaching out and please continue to do so!

[Paula-38]

Hi Saleembhair69,I also had Herpes Simplex viral encephalitis way back in the 1970's as a 1 year old so I grew up with it but n9body ever knew about the long term after effects it might have had on me until I first phoned the Encephalitis Society helpline (about 2 and a half years ago).

I only had it once which I suppose is enough.

I'm so sorry to hear that your Daughter is going through similar experiences to me, and the fact that she has another diagnosis now. I certainly experienced a lot of emotional after effects like anxiety, frustration, similar to your Daughter's, plus I had paranoia, depression, anger and I went on to develop Obsessive Compulsive Disorder referred to as OCD, but I could do all the things your Daughter can do. Please feel free to ask me any questions at all and/or message me if you wish ( the choice is yours).

I'm always here to help out if I can.

[AliBBeerDrinkerSing]

I am in recovery from autoimmune encephalitis, I was in hospital for nearly a year and have no memory from most of that time! I had to relearn to do everything and I am much slower at everything than I used to be! I am on lots of drugs and am 28.. although was convinced I was 26 whilst in hospital! My fiancé is very supportive, as are work, although I’m a long way off going back yet! I have been lucky enough to have lots of therapy- Physio, occupational, psychology, and speech and language.. my temper is short, but I’m working on it! A big problem in the aftermath is fatigue- your brain is healing.. naps/rest time is important, so allow your daughter time for this! I plan my day using a white board to keep on schedule, but it’s important to allow breaks/diversions from this (easier said than done in this fast paced world)