HSV and autoimmune encephalitis help

[Choclover93]

Hi,

i am the carer of a 29 year old sister who has both HSV and autoimmune encephalitis. She was initially found to have HSV and treated, was very pleasant and had retained her long term memory although short term memory was terrible.

Subsequently a few weeks after treatment of her HSV encephalitis, we noticed that she had a sudden worsening of her memory, could not recognise her family members, could not remember events past her 16th birthday and did not even know basic things such as how to use a mobile phone. They redid all the tests and decided to treat her for autoimmune encephalitis in view of her sudden acute worsening.

It has been about 4 months since the initial diagnosis of her HSV encephalitis and about 1 month after she has completed treatment of her autoimmune encephalitis. She now has both poor long and short term memory along with personality changes including increased aggression, impatience, and it has been very hard for our family to care for her. Does anyone have any experience with someone like that? Will she improve and any carer tips to help manage her and facilitate her recovery?

[kitnkaboodle]

Hey, I'm sorry to hear about your sister. I'm 28, and my brother and sister were my caregivers for the first three years after I got sick. My parents are my primary caregivers now, as my siblings are quite burned out. Make sure to care for yourself as well.

Unfortunately, autoimmune encephalitis can occur after HSV encephalitis, specifically the anti-NMDA receptor form of autoimmune encephalitis. Has anti-NMDA receptor AE been confirmed for her?

The timeline you laid out is very, very short, although I am sure it feels like a horrible eternity for your family. It won't be easy or straightforward and there will be plenty of bad days along with some surprisingly good ones, but your sister will improve more. She might not fully recover, though, and the faster one realizes that, the better. Right now, her brain is still inflamed, and none of the family should take anything of what she does or says personally; she is not herself right now.

I got sick nearly four years ago, and I am still severely disabled. But I am also still myself... a changed self.

Let me know if you have any more questions, or if I need to explain anything further.

Take care,

Kit

[HSE_Survivor]

This must be so hard for your family . Five months is very early since your sister’s initial diagnosis. My husband was told to wait two years to have a realistic idea of what level of recovery I could achieve . My first year was challenging for him, as he initially had to take my phone off me , as I texted nonsense sentences to people, believing what I wrote made sense . My senses of smell, taste and sensation were damaged, so chocolate tasted foul, gifts of flowers literally smelt like pooh, and I argued that I didn’t need a coat that winter, as I felt too hot outside .

Therapy was essential - I was lucky in seeing a wonderful speech therapist who also helped me with my memory loss . Things slowly improved , but it wasn’t until the end of the first year that I was well enough to recognise the serious effects of my fatigue and memory loss , and that made me depressed .

In my second year of recovery, I saw big improvement , but every survivor’s level of recovery is different. It all depends on the level of damage caused to the brain, and the brain’s ability to create new neural pathways around the damage.

I’d definitely recommend speaking to an Encephalitis International advisor, as they will tell you what support is available, and they can give carer tips to help manage your sister and to facilitate her recovery.

encephalitis.info/contact-o...

The charity holds zoom meetings for families and carers of encephalitis victims , too. I know my husband says he would never have coped without the support of my Dad caring for me , so it might help you talking to other carers, too . It is worth a try .

Encephalitis had a huge impact on the lives of my family as well as me , so please don’t forget to look after yourself , too.

We’re all here if you have further questions on your lovely sister’s recovery journey . ❤️‍🩹

[EncephInternational Partner]

Hi, if you haven't already been in touch please know that we have a support line and email address if you would like to talk to anyone at Encephalitis International. [phone] [e-mail]