Hi all! I’m here on bahalf of my little sister. She’s 23. Her joruney started with a grand mal seizure on her honeymoon. She was hospitalized in Fort Worth for a month where they determined she had viral encephalitis and meningitis caused by HSV-1. She was released to neuro rehab at Baylor a month later and was there less than 24 hours before she was back in ICU, now in Dallas. They are still running all the tests, considering it to be autoimmune encephalitis. She tested negative for NMDA and an ovarian teratoma. We are still waiting for her complete csf tests to come back. They are treating her aggressively with 7 days of steroids and 7 days of PLEX, and talked about something called IVIG after those 2. She hasn’t talked in the past week, only opens her eyes every other day for a few seconds, and cannot communicate.
I was wondering if anyone has had a similar experience? It’s hard to come to terms with because she is so young.
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emquinty
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I am really sorry to hear about your sister. I had autoimmune encephalitis nearly 4 years ago. It started with a seizure for me too, they never found out the cause as I tested negative for all the antibodies. They eventually gave me an infusion of Rituximab which depleted my B cells then started me on Ciclosporin which is an immunosuppressant. For me the turning point was after the first day of Ciclosporin, I started to feel more normal. It was like I had been in a dream world before that. I hope they will find the right medication to treat her. I was 41 so not as young as your sister but I know it is a real shock.xo
Absolutely felt like a dream world to me too … but I did eventually wake up. I’m sure for anyone watching on it’s horrendous but keep looking forward emquinty .
I didn’t talk for months and don’t remember much of it – other than literally hundreds of dreams that I thought were reality – but I did get there in the end. Life is pretty much normal again, against all of that time in hopsital (nearly four months), and things bit by bits falling into place again. Fingers crossed for your sister and it sounds like she’s in capable hands.
I am really sorry to read about your sister. Last June my daughter - 17 yrs - had 4 seizures within a 2 week period. She was admitted to Southampton Children's Hospital UK and was tested positive for NMDA Encephalitis. She tested negative for ovarian teratoma so we have no idea what the cause was. She was on steroids and had 3 lots of IVIG over the three months she was in hospital. She suffered paranoia and hallucinations and also stopped speaking for a while. She improved greatly after the third IVIG and after spending her 18th Birthday in hospital she was discharged last October. She is still a little forgetful but is more or less 100% better. It was a tough time for her and is a shocking diagnosis to be given but she is now getting on with her life. I wish your sister all the best - I hope this positive story helps
Firstly I’m sorry to hear about your sister, it’s a terrible thing you’re all going through, not least your sister.
My daughter had AE in 2019 and spent 4 months in hospital. Like your sister all tests came back clear for any known antibodies so it was only through ruling everything else out she was given the AE diagnoses. Also like your sister much of her time in hospital was spent in a catatonic state, she didn’t speak for about 2-3 months of her time there as well as multiple daily seizures. Her treatment included IVIG but she also had multiple rounds of plasmapheresis where they removed her own plasma and replaced it with synthetic plasma except every few rounds where she was given donated plasma. This, I feel, had a major impact in her recovery. She was also treated with rituxumab but didn’t work for her so for the next three years she was treated with Tocilisumab, firstly through infusion in the hospital as an outpatient and then through injection at home.
I hope this might be helpful to you and I hope your sister makes a full recovery.
I am so sorry to hear about your sister. My husband had NMDA Receptor Encephalitis. He went through almost all the treatments for this autoimmune disease. He had IV steroids, IVIG, Plasma Exchange, 3 or 4 infusions of Rituximab and 5 infusions of Cytoxan. He is now stable and on oral Cellcept.
Everybody is treatment is different. What works for some does not work for others.
This is a very hard and long journey and my heart goes to you.
I hope you will stay in touch with this support group. They have given me lots of hope and strength during this journey.
Thank you all who have responded to Emily’s post. I am the mother-in-law to this sweet young newlywed. Our hearts are hurting so much right now. I have read many medical research articles looking for any answers and to gain an idea of what kind of time frame and the path recovery might take. Hearing from others first hand helps. Reading your posts brings encouragement that answers can be found. It also reinforces what the docs have been telling us ….longggggg road to recovery. Thanks for sharing your stories and your kind words.
Hello Em, I'm sorry to hear about your sister's illness. Enc is pretty shocking for all concerned. She will probably experience most of the symptoms of Enc. - forgetfulness, personality loss, loss of sense of taste and smell etc. They are all on the Enc Soc website.
IVIG is Intra Venous Immuno Globulin and to get one cupful they have to gather it from about 1000 people. So it's special stuff and strengthens your immune system. My doctor said it cost £500 a go. He seemed keen to stress how talented he was. I didn't take to him really. Most of the nursing staff were great - some the opposite. The tea/dinner ladies were lovely
My enc started about 4 years ago. I can't remember most of it, they weren't sure I was going to make it. They put me in a coma for three days to stop my seizures. When I came round I couldn't remember who I was or why I was in this alien spaceship having my DNA harvested.....
Hospitals tend to not have much info on Enc. The Enc. Soc and the internet are the best sources for info. I quickly learned to walk again, read and eventually write. I couldn't remember my signature which was awkward when paying a repairman by cheque.
I easily tire and need to allow recovery time after days out, walks etc. Some parts of my brain are undamaged others seemingly lost. With rest, good diet and exercise your sister will make a slow but steady recovery. Mental exercise is good too, puzzles, dominos etc. I eventually received the promised support via my GP, a social worker and physio, psycho, speech therapy all helped.
I'm registered disabled now, so have a Blue Badge, a disabled bus pass, a RADAR key for disabled toilets and some financial help. I'm 73 and retired on a pension so am OK for funds. which is a relief. I suffered several spinal fractures during my seizures (I have osteoporosis - weak bones) so suffer a lot of pain. I'm prescribed Morphine and Paracetamol for this and have to carry a doctor's note. I find alcohol helps but this is forbidden.
Here's a poem I wrote, which made me cry when I wrote it:
The Seasons
Tonight the song in my head is 'Pictures Of Matchstick Men'
The night sky overhead zooms out to infinity,
Clouds assemble themselves for tomorrow's journeys,
Birds asleep clothed in feathers, bright and blue.
Winter lies ahead, unknown but familiar,
We get older,
The seasons arrive each year afresh,
Reborn, a theatre stage for our misdoings and regrets.
I used to hike, cycle, sail, rock climb, cave and wild camp. So Enc was a big blow. I'm gradually getting fitter on a rowing machine and hope to dinghy sail again this year and try some camping. I was suicidal for a while but couldn't figure out the best method. Anti-depressents help and I'm OK now in that respect.
I hope this has been of some help. I have other posts if you are interested - have a look.
I'm sorry about your sister. I got sick at age 24 in October 2020, and the cause was never identified, but my neuro-immunologist thinks it was autoimmune encephalitis. I am currently on IVIg to treat the sequelae (specifically stiff-person spectrum disorder) of the original E. My infusion nurse called IVIg a "miracle drug," so we shall see if it helps me or your sister.
Hospitalization for E is a very scary time, but it sounds like your sister has a lot of support from your family and her husband's family. This is only the beginning, and there will be lots of ups and downs, but just know that your sister has gotten through the hardest part (survival), and it's only up from here, slowly but surely.
I have permanent disabilities and chronic conditions caused by E, as is the case with many E patients, but some survivors, particularly with certain types of AE cases, go on to eventually live fairly normal lives, albeit with a few limitations and challenges. Please give your sister and yourselves time to understand what is happening and has happened and how things will look in the future. Be patient with her and yourselves.
The best advice I could give is to be patient, as recovery is a long journey . I had HSV in 2013. It affected my short term memory , and my ability to speak, read or write . I had speech therapy for a year , which was a huge help in my recovery, but the virus can cause acute fatigue, so apparently I sat it silence on the sofa most nights for the first year. Just to make things worse, I started having seizures , as HSV has left me with epilepsy .
It was a tough time, but my wonderful encephalitis consultant told us to be patient, as it takes a full two years after diagnosis to see the full level of recovery that can be achieved . In the second year it was like a light switch had been switched on in my brain. My memory improved, my energy levels improved , and the epilepsy was brought under control with the correct meds . My chatting in the evenings became normal again ( even though I can still snooze on the sofa mid conversation sometimes . )
My husband, Dad, daughter and sister have been just as powerful as any medicine in helping me regain my independence and not lose hope . I’m sure having a caring sister like you will help your sister’s recovery, too .
Hi . The consultant at the hospital I was first admitted also worked at The Walton Centre for Neurology . The Walton Centre has a team of encephalitis specialists, so the Consultant at the hospital I was first admitted to was able to refer me there .
I’m really sorry to hear that there’s so little support in the US . Here in the UK the treatment depends on where you live. I was really lucky living in the city with the Walton Centre, as it meant that I had a year of speech therapy & I can still see an encephalitis specialist. But in other cities, people are released from hospital with zero aftercare or support . It is sadly a post code lottery .
The Encephalitis International charity has professional advisors you can speak to & have zoom meetings with, if that would help you at all?
Oh yes, they are helpful when you are critical, then no long term plan or supervision. We have experienced zero care or aftercare support. It is terrible. I do need to schedule a meeting with the advisors here, thank you!
It is a scary journey but trust me it he better. It takes a long time to recover from autoimmune encephalitis - some times years - but things do improve. I didn’t believe it at first when it happened to my partner but your sister has you and she will get better.
First off, so sorry to hear about your little sister. My husband (age 68) was diagnosed with Enc. caused by H1 virus this past May (2023). What I want to tell you is that this site helped me hang in there by telling me that recovery is a very slow process with this disease. They were SO right! When improvement steps are small and infrequent, it is hard to remain positive. But, my husband has improved greatly since his journey from hospital ICU, to neuro ward and then to Rehab, and he continues to improve since he returned home on July 30, 2023. The story I want to tell you is this:
When my husband was in Rehab, I finally went to my hair stylist to have my hair cut and ended up in tears telling her about my husband's illness. This young woman (about 20) said she had heard of that disease because her grandmother got it right after she got married at a very young age (like your sister)! I was stunned, as most people have never heard of this disease. She proceeded to tell me that it took her grandmother a long time to heal, but she did, and she is now still living life in her 50s!
So every person's Enc. case is different and so is their recovery. But what I hope this note imparts to you, is to be hopeful and patient.
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