My daughter 22 fell ill with encephalitis in July this year. She responded very well to IVIG and steroids for 5 days. She left hospital feeling well enough to return to Uni and work. She has autoimmune encephalitis seronegative. In late August she deteriorated and returned to hospital in September for another round of IVIG and Methyl Pred. She came home for 3 weeks where we found it very difficult as her behaviour had become hyperactive, impulsive, she couldn't sleep, she kept wanting to run away. She returned back to hospital in late September and is now in the brain injury rehab unit. For 2 weeks she's been seeing the neuro psych, ot, speech therapy. Her memory is not too bad, she can walk thankfully and communicate. Most of her issues are behavioural. She lacks empathy, doesn't care about anything, is possibly grieving as we all are the loss of her usual self. My question to you all is - Have you been through this? Does the therapy work? When will our daughter get better. What else can we do to support her? She comes home on the weekend but honestly that's quite difficult. She has a top of IVIG next week. Her brain swelling has gone down practically to normal state. Are there meds to fix the behavioural issues? I am at a loss to know what to do. I wake up every morning and can't believe this is happening. Her whole life is ahead of her but I can't see the future being well. Is it permanent? Thank you for reading.
How long to heal?: My daughter 22 fell... - Encephalitis Inte...
How long to heal?
Hello RainthenSun
I had autoimmune encephalitis in January. I am still learning myself about what happened to my brain and what the after effects mean. I never lost function physically and like your daughter, beyond a brain that felt like it was on fire, my symptoms were all behavioural. Lack of empathy/connection, irritability, trying to flee, unable to sleep. I also had episodes of psychosis, but I have no memory of those. Nine months on with lots of rest, supplementation, protecting myself against stress as much as I can and only part time work, I am well on my way to a full recovery. I would say back to my old self. My brain swelling has gone down practically to normal state as well - but I still have autonomic dysfunction and weird sensory symptoms and pains. So while the scans and blood tests reassure me that I am basically ok, I still feel the effects of the injury to my brain.
So I want to say firstly how lucky your daughter is to have you. And secondly, from my experience, my honest impression is it is still early days for her. We all recover in our own way and our own time, and she has youth on her side. I hope that helps and sending you best wishes (and a big hug).
Hi stormy, can I ask what supplements you take? Did a neuro psychologist help you with the behavioural issues and did you ever have feelings of self harm? Thankyou and please only answer what's comfortable for you 🌷
Hello RainthenSun 😊, my behavioural symptoms resolved mostly in hospital and then slowly after I returned home. I actually wasn’t diagnosed at that point and think I was fortunate that I have a background as a registered nurse and intuitively knew how to keep myself safe and get help once I was home. My case wasn’t severe, so that was enough, even though I shouldn’t have been on my own. It was my new GP who I went to for my Hashimotos Thyroid Disease who started me on the supplement regime that started to bring down my very high antithyroid antibodies. I improved almost immediately from that time. She is a functional medicine/integration medicine GP. When you find a good one, they are amazing. She focuses on my thyroid but many of the supplements she prescribed are also good for the brain. At my next visit I will ask her if there are other things I can take for my brain. I would say that is my major takeaway - I need her expertise to help me be on the supplements that really make a difference and mean I am investing in the right things. I did have thoughts of self harm when I first came home and that was a very hard time for me. As mentioned, I was still undiagnosed at that point, and it was the support of my GP that made the biggest difference. She listened and believed me and referred me to the specialists I needed in my case (rheumatologist, endocrinologist, neurologist). I did see a psychologist for a few sessions which was helpful in debriefing my experience. Looking back, what was key for me when I returned home was being in my familiar environment, being able to sleep (the hospital was very noisy) and creating a calm and nourisishing routine. I started swimming every day and I think that may have been one of the things that helped the most. I also took up art (paint ny numbers! 😊). I had to return to work as it is only me, but I had a month off and then was lucky to have an employer who was able to give me work one or two days a week working from home. Also I didn’t have to liase a lot with coworkers which was important at that point I think. Something else that helped was I joined a community group of like minded souls who have been so kind to me and helped my brain settle and enjoy connection. The supplements I am on are N-Acetyl-Cystein, Thyroplex, Myo-Inositol, Omega 3, Zinc, Selenium, Vitamin D and a wholefood multivitamin. She wanted me to take a tumeric supplement but I couldn’t tolerate it. I was really glad to read your daughter had a good day the other day. That is so positive, because one good day means there will be others and eventually she will string together more good days than not so good. When she comes back to herself, like the others here mention, she probably won’t remember much of the behavioural stuff. That is what I was most distressed about - the things I must have said and done when I was ‘offline’ because of a swollen brain. That is what I call it, because I wasn’t there as myself. Just my operating system that meant I could walk and talk but not engage my executive function. The executive is the smart one with social skills 😊. My experience has told me that the behavioural manifestations were symptoms, just like a headache would be. So many things can help (I believe neuropsychiatry is a big one), and, from my experience, those symptoms will improve as your daughter’s brain heals. As an RN who had a long career in health, I can tell you your daughter will have the best outcome she possibly can. She has a mother who is asking questions and trying all avenues to help her. Keep going, you will get there. I hope I answered your questions, let me know if there is anthing else ❤️
That's so helpful and really positive. You've lifted my darkness so much by saying how she will improve. It is all time, it's slow. I will keep everyone posted here.. thankyou and enjoy your Sunday ☀️
Hi RainthenSun11,
I am really sorry for you all, thats not easy. I am also seronegative(or HanDL Sydrome)
I think first of all it is important that you take all her stress away. Tell her its okay she is not bad bcz of her reaction and university can wait. She needs a lot of sleep and silence. The brain needs to regenerate. Stress is poison for the brain. I am happy that I was no second time in hospital. This was really traumatic you know. And as I had this encephalitis I was also psychotic and cant sleep and run away and I was really confused(in this stadium, brain takes damage I think because the ambulance doctor said in this behaviour we have to act instantly and go to hospital). And since hospital I am at home and understand that its not good to go instantly back to my stressfull life. This all takes time. And now because of my affect problems (I got angry really fast) I take now "Gabapentin"... I start slow (100-100-100mg) and after few weeks I am on 200-200-200 and I feel better, not that overwhelmed fast. I am really happy that I have a really good doctor! (this doctor makes psychiatric and neuro) and she is really emphatic and good in her job... Stay in contact with a doctor who know this type of disease... And who cares really about this.
This is my experience but I am not same level like your daughter, but I know you feel lost like my parents and partner. Try to know that this is also really hard for her. I am also really sad and down sometimes... Because I am afraid of future... But yeah, try to make her brave
Sorry for my bad english, I am from austria 
if something is not clear you can ask
PS: my doctor ask me about which medicine I want to take (Gabapentin or another one) but for another one the sideeffects for the skin is worse then Gabapentin. I choose Gabapentin bcz I have eczema quite fast. I forgot the name of the other medicine.
What medicine she must take at home?? Prednisolon?
All the best for your daughter! I pray for her! It is really hard I feel you all 
Thankyou juppiter! This week they prescribed our daughter risperdal. A tiny dose to help with sleep and also calm down behaviour and any self injury thoughts. I will look into Gabapentin. She had a good day yesterday. I must say the psychologists work is amazing so I don't know what I will do when she comes home and no longer has daily sessions.. do you think part time with will be good for her?
Dear Rainthensun11,I am happy to read that she had a good day. I can remember the other medicine my doctor wanted to give me. Lamotrigin. I think it is good that I choosed Gabapentin. Bcz of sideseffects and I researched now in the internet and as I see, Lamotrigin and Risperdal is more on psychiatric side(strong emotions like self hurting) and Gabapentin for clinical. Please notice that Gabapentin should be start in low dosis. My doctor tell me, the most problem is that a lot of doctor says instantly 300-300-300. Its dangerous bcz of the bloodpressure. It makes it low you now. I have generell low blood pressure.
No I really dont think that part time is good. Loud noises and many people. She need to stay calm.
It is important that she has a daily routine. Daily time to stand up, eat, medicine and supplements(my supplements are in the morning before breakfast : IRON and Alpha Liponacid. For breakfast I take B12 spray but a special one, curcumin and omega-3 dha and eha, at lunch, vit c and zink and selen and in the evening multi vitamins and before sleep melatonin spray and magnsium, L-Theanin and a sleeping tea with baldrian, camilla,... )
Daily routine means also do something with her brain. I have puzzles, exit games or strategic game like "bird wing" but maybe for beginnig is too stressfull. She needs a calm hobby and before sleep its good to make sudoku and quiz. Reading... I started for example with photography astronomic and birds. (expensive hobby but really nice for me)
Everyone is different. Please notice that I talk from my experience and want to give you awareness about this neurological disease. But I think that me and others here are the same oppinion with no work, no stress and daily routine.
Did they make a lumbar puncture in the second time of hospital?
All the best for you all. ❤️🩹
Hi juppiter,She has had one lumbar puncture which came back negative. This was in July when she was first hospitalised. She also received iv steroids and then second time when in hospital steroids and ivig again.
I give her B12 and probiotics daily. I also give her colostrum.. she needed the risperdal as she was staring to see things, hallucinate and her dopamine levels just seem really high. She has trouble sleeping every night. Take 4mg melatonin and 5mg of risperdal. She can fall asleep well just wakes at 3a.lm and is awake for a couple of hours.
She is due to have another mri in a few days to check for further inflammation has come up.
We hope to have her out for the day on Saturday and Sunday ❤️
Thankyou juppiter.
Dear Rainthensun11,may I ask you how high was the cells number in the lumbal puncture? I am interested in.
I am really sorry for her. This psychotic is horrible. Please let updated about her recovery 🫂
All the best for you 💖💐
Hi. I have no idea about this. I will question the doctors on Monday. Thankyou for your advice 🌷
Hi RainthenSun11
I am sorry for what you , your daughter and family are all going through .
I can only go off experience with what my mum went through almost two years ago but I will share it with you to hopefully give you some more hope and comfort.
It’s really hard to explain just how awful the 16 months were whilst my mum was hospitalised for encephalitis. I really didn’t see how she was ever going to improve because her behaviours was so chaotic and she was like a stranger to us all for many months . The turning point for us all was when my mum was finally admitted to a specialist neuro psychiatric hospital. It wasn’t quick like everybody had always warned me , however over the 8 months that she was a patient there , with the correct treatment and routine, my mum started to come back to us . The moment she was finally able to come home to her family was a memory I shall treasure forever.
It feels like the pain and anxiety will never end whilst you are all going through this horrible journey . Things will get better , it just takes a really long time in some cases . A LOT of patience is needed and of course love . Your daughter is most likely completely unaware of what she is doing or saying at the point … even now I remind my mum sometimes of some of the things she did or said and she literally cannot remember a thing . Which to be honest I am so grateful for her own sake !
Always be the best advocate for your daughter because nobody knows her better than you . They tried to send my mum to a rehab hospital which had awful ratings and i just had a terrible gut feeling , so I stamped my feet and made my thoughts clear . Luckily my mum had a fantastic team behind her who listened to me and let us as a family make some decisions based on what we felt would be best for her .
Any questions , I am here .
Thankyou Iw1990..I feel what you've been through and thank you for sharing your experience. Our daughter is in a very highly regarded brain injury rehab unit do I am glad for that. She has daily sessions, sometimes a couple of times a day with her psychologist and ot and st. I won't have her come home until i know she is ready as she wont receive the same level of therapy once an outpatient and I'm worried of things going backwards. We are there for her everyday. It is so tough for her and I wait for her to turn around and beat this horrible disease.
So sorry about your daughter.
My husband didn't really have speech issues which was why I was surprised they recommended it along with PT and OT. What I learned is that speech therapy helps reconnect the dots in the brain. And doing that helps overall.
Watching a loved one recover from E is excruciating slow and painful. And everyone is different. What I can give you is a few examples that may give you hope. At the beginning of my husband's recovery, he couldnt use a cell phone or computer...it was just too difficult for his brain to process. Now, he uses both again and is even back to paying bills on his phone! Early on, he couldn't watch a full movie, it was too much of an overload. But now he does...admittedly he likes the lighthearted kind, rather than the intense stuff. Those tend to overload his brain. He has come a long way. He still gets fatigued easily.. and when hit with too much information all at once, he goes into 'overwhelming mode' and just has to stop.
The other thing we learned is that sleeping is like doing brain calastinics. Rest and sleeping is healing.
My husband is a year and a half into recovery.
I hope this helps.
I know what you mean about liking the lighthearted kind. In my first year I became obsessed with watching the tv series ‘Frasier’ , as I could understand the plot and characters . My husband didn’t enjoy it, but the fact I’d actually laugh out loud watching the show helped him, too.
Hi RaintheSun. Your daughter’s experience sounds similar to mine. I had HS Encephalitis in 2013. It’s different from autoimmune E, but my first year of recovery was equally difficult. A process called ‘neuroplasticity’ is what is happening to your daughter right now, as her brain literally reorganises itself. My consultant advised my husband to be patient, as it would take two years before he could see how far my brain could recover and create new pathways around the brain injury.
I didn’t understand any of this, and I felt frustrated by my life not returning back to normal . My husband says I didn’t speak to him much that first year, and he felt lonely , as I’d literally sit in silence with him in the evenings.
I had OT and speech therapy. I hated OT as the therapist was impatient, and she made me feel like an idiot when I’d be forgetful or repeat myself . But the speech therapist was brilliant and she helped me understand how ill I was. Her therapy wasn’t just about speech, she worked on my memory with me. I found I could cry with her and tell her my dark thoughts, and she’d explain why all my difficulties were related to the damage to my brain . She also explained to my husband that neuroplasticity takes a lot of energy and focus, hence my silence and constant need to sleep that year, too.
I didn’t see significant improvement until my second year of recovery . 2024 is still very early days for your lovely daughter , so the best advice I could give is to be patient . In July 2026, that’s when you’ll have a realistic idea of how far she will recover . I’d recommend her taking an Omega 3 supplement, too. (It’s worth googling why that helps recovery from brain illnesses . )
Big hug, and let us know how things progress. ❤️🩹
reaching out!!
Encephalitis missed by GP and By Eye casualty visit
Viral Encephalitis 
A comeback is possible
