I’m new to the board and wanted to introduce myself. I’m the mother of a 5 year old boy on the long road of recovery from antibody-negative autoimmune encephalitis. A quick summary of our case history: this summer my husband and I started noticing our son’s increasingly odd behavior. He began having long laughing fits for no reason, followed by periods of staring off into space—almost catatonic. (We later learned these were likely gelastic seizures.) He was frequently hyperactive, often waking up at 2 or 3 a.m. to run around his room, whilst laughing hysterically. His language skills rapidly deteriorated until he became totally non-verbal. He stopped responding to questions and interacting with others. He had sudden, violent tantrums. After years of being potty-trained, he also suddenly stopped going to the bathroom on his own, and we had to start using diapers on him again. In essence, in a couple months he went from being a happy and healthy 5 year old, to what appeared to be a very confused and agitated special needs child, and we had no idea why. My husband and I were devastated.
After weeks of misdiagnosis as autism/ADHD, several hospitalizations, and innumerable tests, in late August my son was finally diagnosed as having antibody-negative autoimmune encephalitis. Since then he’s had two courses of high-dose steroids, IVIG, plasmapheresis, and two infusions of Rituximab (the second one just under a week ago). He’s out of the hospital now, his seizures are under control, and overall he seems to be slowly recovering (thank God!), but he is still often giddy, unfocused, and can only say the odd word. Developmentally, he’s more like a year-old baby in a 5 year old’s body right now; he is certainly not the child he was a year ago. I am grateful that his decline has stopped, and that we’ve had access to fantastic medical care, but I’m also worried that my son will never fully “come back,” and that he will never be able to attend regular school again, and have a normal life. (He had just begun kindergarten when this nightmare spiraled out of control.)
I tend to be very impatient—🙃—so perhaps I just need to be patient while the Rituximab (hopefully!) continues working its magic, his body stops producing the harmful antibodies, and the inflammation in his brain keeps going down. I know we have months (years…) of recovery and rehab ahead of us. In the meantime, I’m just looking for hope, and to make contact with anyone who’s gone through the same thing—in particular, parents of small children.
Wishing all of you the best as you navigate this difficult journey. Thanks for reading my ramble.
Harper
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Hi H, It's no ramble - it's a very detailed and caring account of your situation/s. You don't say where you live, I'm in the UK so almost everything is paid for and care comes via the NHS.The two year recovery time is about right, if all goes to plan. Support and rehab may be slow to arrive - here there are waiting times for everything. But when it arrives it's very supportive, experienced and works well.
Once the medications are sorted and any other extra issues resolved it's a bit of a waiting game. (I also have spinal injuries, thyroid deficiency and osteoporosis which were only revealed by the enc-related blood tests - a sort of a positive.)
I'd suggest your son needs to be presented with very positive things, baby donkeys, woodland, flowers, music - all the lovely things in life.
I have/have had auto immune encephalitis which seems similar, seizures and brain problems - hallucinations, no taste or smell, no short-term memory. I can't imagine how you cope with a regressive 5 year old. Well done!
The mental changes can be positive - I lost a lot of bad memories and some things seem to improve, cognitive abilities and intuitiveness.
The Encephalitis Society is a great source of support in the UK, lots of info on the website and helpful phone support when needed. We didn't even get a three fold leaflet when we left the hospital.
I am so impressed with your dedication and compassion and I'm sure others must feel the same - bravo!
Thanks Gandalf; I appreciate the reply. It's especially encouraging to hear that not all of the cognitive changes you experienced/are experiencing are negative.
I was directed to this forum from the Encephalitis Society. They do indeed seem to be the best source of info online. I especially find the first-person accounts on their website helpful. For anyone interested, see: encephalitis.info/pages/cat...
We are Canadians living in California, so I'm somewhat familiar with both the public and the private model of healthcare. My impression is Canadian Medicare is a bit like the NHS: everything is covered, but waitlists are a given--definitely pros and cons. We have private insurance, and frankly, I've been blown away by how quick and efficient the healthcare is here compared to the public system in Canada. (In my home province, it is common to wait 3 years plus just to get a family doctor...) We've been at the Children's Hospital of Los Angeles, seeing a team of pediatric neurologists twice a day, every day, on their rounds. MRIs, EEGs, etc., usually take no longer than 24 hours to acquire.
In our case, physical rehab will not be necessary, thankfully. I've read so many accounts of encephalitis patients losing the ability to walk, etc. We were lucky on that front. Instead, our biggest challenge will be teaching our son how to talk again. He says maybe three words consistently right now. We have a private speech language pathology clinic lined up. Our son is still too emotionally volatile to start yet, but hopefully soon.
Has your short-term memory improved? I see from your profile that your problems began in March 2020.
Hi Harper, thank you for your reply.Sounds like a long and uncharted road ahead. Some memory loss has proved OK as negative ones have gone or lost their edge too. It was funny coming around and not knowing very much about my life. Slightly like a spy having to learn a false identity before a secret mission.Things were very strange indeed, looking in my wardrobe and wondering who bought all these things or in my garage and not recognising tools and what they were for.
Cooking was too difficult as short-term memory and sequential tasks proved very unreliable. Had I put the salt in? Can't remember - should I add more....?Things all had to be arranged differently in advance and became several times as difficult. In any case I couldn't taste the end product so all seemed a bit pointless.
I stick to short tasks, I have loaded up the washing machine and hung out the washing today and my wife took a photo of me to go in my journal. That was one thing recommended to me by the therapist - keep a journal to avoid everything just becoming a half-remembered blur.
As regards your situation, I used to teach and learned a little about the differing theories around child development. It was regarded that children learn with different themes - audio, visual and touch as far as I remember. So making music and sounds may be a path, or painting and graphics and tactile. Your child may pick up Morse code faster than writing for instance. I may be on tricky ground and you probably are working on some lines already.
The private healthcare system is new to me and from what you say seems to work well. Now that my support has arrived I'm pretty happy but it has taken over a year to arrive. Thankfully we're not allowed firearms, otherwise I wouldn't be here.
Listening to music of every kind and making music may be a natural path. There is a lot to discover.
I'm still sleeping a lot and taking at least one nap per day. Memory seems to be improving but still a long way to go. I forget some things instantly other things can return to mind quite oddly. I remember that Thomas Cromwell came to grief when he sent a rather flattering picture of Anne Of Cleves to Henry Vlll who turned out not to be quite so pretty (his projected bride) and was eventually beheaded amidst palace intrigue. But have I had breakfast or what day it is? - I have no idea.
Generally my conversation is good, vocabulary ok too. Hard to remember the things that are gone..... Luckily I'm retired after a long career and on a decent pension - which puts us in a better position than many who are struggling to pay bills etc.
My goal is to get back to my previous active and adventurous life but I may just have to admit that times have changed and I'm no longer the 80+ miles a day cyclist, hiker and sailor of old. Wouldn't be too bad if I could remember a bit more!
I'll stop now - the nap is about to arrive!
Best Wishes and I hope this has proved helpful, G2
I am so sorry to hear about your son. I am a caregiver to my husband who is 58. I can identify allot with your email. My husband was diagnosed with Anti MNDA Receptor Encephalitis in August 2020. Even though I could not wait for him to get out the hospital, I was not prepared for him. I thought he would be the same person before he was sick.
When he came home, I had to remind him to brush his teeth, take a shower and change clothes. It was like I had a child again. He had lost 10 to 15 years of his memory and his short term memory was basically gone. I too would spend many nights up wondering how long this would last. I sit up crying. I eventually started learning more about the after effects of the disease. I found this website which was most helpful and the Encephalitis Society in UK which Gandalf2 mentioned. I watch the success stories on Encephalitis Society website. I brought a booked titled "Life After Encephalitis" by Ava Easton. This book really helped me to understand what my husband is going through.
As a caregiver I learned to take care of myself so I could take care of my husband. I learned to look out the window at the birds and squirrels while he struggles working on his calendar. Looking at nature, gives me the patience to work with him.
I would like to share the following four words that have helped me to help my husband this last year....His recovery takes Repetition, Time, Patience and Love.
He has also been through Physical and Occupational Therapy. I would ask his neurologist to order these therapies for him. They helped him immensely.
The Encephalitis also effected his eye sight, hearing and bladder. We are fortunate to live in Houston, TX near the medical center so he now sees a neuro-ophthalmologist and a neuro-urologist.
I also realized rest is very important for the both of us. I encourage him to take a nap or rest every day. His brain needs a break.
I now can tell when he is uncomfortable in a situation. Too many people or an unfamiliar place. I have learned to try to prepare him for new things.
I am happy to now say... he is doing much better. His short term memory is improving. He is using his calendar everyday. His medicine of Cellcept and Rituxan are helping him. I have learned to enjoy our life where he is at, one day at a time. He is able to show me his appreciation for all I have done for him everyday.
Your experience reminds me of my own. Thank you for the honest, heartfelt response. <3 None of our friends or family knows anything about encephalitis (nor did I, up until a few months ago), and I think they all assume that now that our son is out of the hospital, everything will be just fine. What I'm discovering--which you and everyone on this board already knows--is that we've only just begun the struggle. Now we have to learn how to live with a loved one with an acquired brain injury. You must have a whole different set of challenges and worries when it's your husband, as opposed to a child. Clearly, becoming a carer alters your relationship. And I presume your husband was still working (at 58) and this has affected his career.
I've read the Ava Easton Book. The patient accounts in the middle chapters were very helpful. (The other chapters were clearly from her doctoral study research and less interesting to me personally.) For those who might not know on here, Easton's the head of the excellent Encephalitis Society out of the UK. She also hosts a podcast. Another useful, and very recent encephalitis book is Catherine Jessop's Pulling Through: Help for Families Navigating Life-Changing Illness: amazon.com/Pulling-Through-...
Jessop is British, so the healthcare system she navigates is different from ours, but otherwise, her experiences are similar. Her 60-something husband was stricken with encephalitis a few years ago, and this book is about both the everyday practicalities of patient-care, and bigger-picture philosophical issues we're all dealing with. Her husband's case was particularly severe, and he was in the hospital almost a year. He can no longer work and their lives have changed a great deal.
Am delighted to hear your husband is doing better now. I hope he continues to improve. One of the trickiest parts of encephalitis is that there's no one set road-map to recovery; every case is so different, and it's hard to know what progress is reasonable to expect. I guess we have to live with the uncertainty.
My Herpes Simplex Encephalitis story was very similar to your son (except that it was the day after my 1st birthday) when I caught a virus which resulted in viral Encephalitis and Status Epilepticus at the same time, so I would have been 2 when I was in your son's position. However, some years later I was sometimes referred to as a 9 year old when I was 11, and sometimes like a 13 year old, and then when I was 18 I was referred to as a 12 year old but as I got a lot older I am now either average or just above average for my age. I didn't get the right education, which apparently is called children's rehab now. I was always in special needs education only because there was a nurse there because if I picked a virus or infection up I used to have generalised status seizures, and I was often hospitalised so I was off sick a lot. I wouldn't know what a ^so-called normal" life is really from my experience.
My language skills were last, my attention span was also last. I was very anxious and very paranoid when it came to talking to anybody (other than my parents), also my words would get stuck coming out, so I couldn't make a fluent sentence, they used to come out in bits here and there and stop in-between which I hated and so did my Mum at the time (though she passed way almost 3 years ago now) but she was always extremely anxious and often impatient at times whereas my Dad was more wuiet
and patient with me
I imagine that you would need to be very patient while the Rituximab kicks in and even thereafter because I found my Dad's patience helped me and if I had have been given extra time for allsorts of things , I'm sure that would have helped me, however I hope this might help your son at school and with any sort of reading or watching TV take in information in general and/or getting him to do just one thing at a time can help, not rushing/timing him for everything. I am 40 plus years post Encephalitis and I'm so much better now ( bar for the fact that I have suffered from profound obsessive compulsive disorder all my adult life including now. Though I had OCD traits as a 13 year old and nobody knew what it was. It's only this year I finally have a diagnosed Acquired Brain Injury which is a huge relief.
Please feel free to ask me any questions anytime as I am here to help as many people as I can.
Thank you, Paula. It sounds like you had lingering problems throughout your childhood and teenage years (and adulthood?) post-encephalitis. I'm sorry to hear that. I'm taking to heart what you said about the importance of patience when dealing with children with encephalitis. Not my strong suit, but I'll have to try harder.
I know lots of parents with children with encephalitis, a lot of people join the encephalitis societies calls! I'd say that's where you will meet others and everyone supports one another which is amazing. Here is a link for the virtual gatherings: encephalitis.info/blog/virt...
Hi - it sounds like we have had a very similar experience in terms of onset, diagnosis, and symptoms with our sons. My son also has antibody negative autoimmune encephalitis. He became ill when he was 3 1/2 years old. The onset and progression of his symptoms were almost identical to your son - he had staring spells, lost the ability to talk, was no longer potty trained, and had very similar behavioural symptoms. Nights were the worst as he had terrible episodes. Unfortunately, it took our son almost 2 years to be diagnosed. We went through a very similar experience of being told it was autism, etc., so I needed to continue advocating until someone listened, all while he continued experiences symptoms. We have the most wonderful health team now and I am so thankful. He started receiving treatment when he was 5. The first round of treatment helped immensely, but he has continued to have reoccurrences of inflammation. He is presently going through another treatment round of IVIG, steroid, and cyclophosphamide treatments. I am so glad that you were able to treatment for your son more quickly; I am sure that will contribute to his recovery.
Even though our journey has been long and is ongoing - I can offer hope. Our son has improved immensely from his treatment. He attends school, is amazing at coding, can read at his grade level, is kind, and absolutely hilarious. He struggles with attention, focus, memory, physical coordination, etc. but he is undaunted by this and is the bravest, most appreciative little dude I know. I hope this is helpful to hear. Please let me know if there is anything else I can share about our experience to help support you.
Please take care of yourself. I'm sending all my positive thoughts to your family.
Oh Willow, if I could’ve “liked” your post 4 times, I would’ve. Yes, we’ve gone through the same nightmare. Thanks so much for responding, though I’m sorry to hear about your son’s struggles, in particular, that it took a good 2 years before he was accurately diagnosed. We now suspect that our son had low-grade encephalitis for about a year before things deteriorated so badly (seizures, near-catatonia, loss of all speech and awareness of environment) that we had to hospitalize him this August. From that point, it only took a couple weeks for the excellent neurologists at the children’s hospital to accurately diagnose him. He was tested extensively. During the previous year, leading up to this, he was misdiagnosed by his pediatrician and by a supposed autism “expert” as having autism and ADHD. To be fair, some of his symptoms were similar. But many were NOT. And most obviously, autism does not set in suddenly at age 4.5. Their misdiagnoses set us back months.
As an aside: I see you are Canadian. I am a New Brunswicker but haven’t lived there in ages. Our family lives and works in California (for now, anyway). I can well imagine the hoops you had to jump to get your son diagnosed. I remember. My mother, in rural Albert County, NB, died at age 58 waiting for a specialist…
At any rate, I’m delighted that you have a great medical team now.
I can’t tell you how encouraging it is to hear that your son is now able to function reasonably well in regular school! To be honest, we are still at the stage where our son requires 24/7 constant supervision. He literally cannot wipe his own butt if he has a bowel movement (excuse the TMI). If I need to do laundry for 15 minutes, he will make a huge mess while I’m in the other room. So I spend 90% of my day helping him, and 10% of it helping our 2 year old, who is much more capable and mature. It’s exhausting. However, he’s not having seizures; he grunts or responds monosyllabically to direct questions instead of just staring off into space; and he can (just barely) dress himself again—so he’s leagues ahead of where he was in August, even if returning to kindergarten seems like an impossible dream right now.
It's so lovely to hear back from you so quickly! You can absolutely DM me anytime. I love that you are from NB and are now in California. My husband and I lived/went to school in IN and then came back to Ontario. I can empathize with everything you have written. It took Ryan over a year of intensive speech before anyone could even understand a few of the words he said. Now he is in the other room, singing with his twin brother, while they play minecraft - and he doesn't ever stop talking/singing! I feel like there's so much we could share, so please don't hesitate to be in touch!
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We have a private speech language pathology clinic lined up. Our son is still too emotionally volatile to start yet, but hopefully soon.
