Hi, I'm looking for people or parents/carers of children who have been affected by the awful condition Encephalitis.
My daughter Alice, was 4 when she fell ill as a result of HSV Encephalitis. I'd never heard of this condition prior to her being diagnosed in 2018.
She made a great recovery initially, but from the age of 5 onwards I began to see the true effects of her acquired brain injury. She has since been diagnosed with secondary ADHD and in 2021 began having seizures which has been diagnosed as epilepsy. All thanks to Encephalitis.
Although I thank god everyday that my little girl recovered so well, I'm grieved for the struggles she has been left with - particularly in regulating her emotions and impulsive behaviours, and difficulties with some memory. Not to mention the huge impact it has had in her school life. I worry for her future.
Alice is now 7, nearly 8 she is funny, beautiful and strong willed. She loves music and all things unicorn. I want to know if anyone has shared the same struggles during their or their child's recovery from this life changing illness?
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beckyalice86
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Hi, Becky. I’m sorry to hear about your daughter. Alice looks precious. (And I love her name.)
I was 24 when I got E, and, as my parents say, having a sick (and, in my case, nearly dying) child is one of the worst things that can happen in life. But, I am also sure you being strong for your daughter is the best thing you can do for her.
You might be interested in this: The Encephalitis Society is starting a virtual meeting for parents of children with E in a couple weeks. encephalitis.info/blog/virt...
I can only imagine what parents of children with E experience. People ask me how I’m doing, but they rarely ask how my family is doing, even though my family remembers things I don’t and was there through everything—all of uncertainty, all of the trauma, all of bad days… and all of the good ones!
I am just over the year mark in recovery, so it’s still very early. Thankfully, I’ve regained a lot thus far: I can walk, eat, pee, speak clearly, and think fairly well. I am more emotionally stable and accepting of my conditions and disabilities. I think having a structured routine, even to the point of seeming appallingly boring to others, has helped me manage symptoms better. My brain begged for reprieve and less stimulation, and I am finally starting to listen, albeit imperfectly. I have a very limited life, but a life nonetheless.
Hi Becky, I am so sorry to hear about your poor Daughter. I had the same diagnosis as your Daughter the day after my first birthday.My parents had also never heard of it until I was diagnosed and I was also diagnosed with Status Epilepticus at the same time "a severe form of epilepsy" but there was no mention of acquired brain injury or long term after effects. I emphasise so much regarding my emotions, and some impulsiveness but not so much memory only when it came to watching something on television that had a storyline to it. I have had, paranoid thoughts, anxiety, Obsessive Compulsive Disorder - OCD and Clinical Depression.
I only recently discovered The Encephalitis Society and I used the helpline since late 2018 when I wanted to know why my OCD is refractory (prone to relapse) and I came across the encephalitis website where it talks about Emotional and Behavioural changes, and I have been a volunteer for almost 2 years I think in February, I chose this because nobody knew what was wrong with me and I don't want that to happen to your Daughter and other poor children and their families/friends and of course everyone who has/had Encephalitis I am here for you, your Daughter and everyone on this forum.
Please feel free to ask me any questions at all anytime.
In my opinion there is a light at the end of the tunnel, even though encephalitis did have a big effect my social skills and school life. I was often hospitalised every time I picked a bug/virus/infection etc as this used to trigger off my generalised status seizures, then when I was ten the hospital doctors changed my medications while I was in there for six weeks. I was then free for a full year, then I had another one at 13, then none till I was 17 and that was my last.I sincerely hope that your Daughter in the future will be able to follow in my footsteps.
My processing speed has always been the worst, although many people say memory is the worst for them but every individual is different. I have Executive Dysfunction and poor attention span.
I just thought this might be of some help to you and your poor Daughter. The good news is that The Encephalitis Society are there for you your family and your Daughter, whereas back in the 1970's/80's there was no Encephalitis Society out in those days when I had it, so I got nothing nor did my parents.
I hope your Daughter gets all the correct help that she is entitled to .
I wish you, your family and your Daughter All the best and Good luck!Please keep me posted how your Daughter gets on.
I am so sorry to hear your doctor has been affected by encephalitis. She looks like such a sweet girl. I have met many families, parents, and carers of children with encephalitis via the zoom gatherings through the encephalitis society and would highly recommend it if you haven't already joined one! encephalitis.info/blog/virt...
The encephalitis society also has an incredible connection scheme where they can connect you with other people and families in a similar situation: encephalitis.info/connectio...
You mentioned Alice is now 7 but there is a useful animated video via the encephalitis societies youtube page explaining encephalitis to kids (they also have a book via the society online shop) youtu.be/fw-s-tlnBp4
Hi there, yes I was given a copy of Gilly the Giraffe's book to help her understanding her illness back when she was 4. It's such a gentle way of explaining to a child what is happening to them. I have reached out to the Encephalitis Society to join the pilot meeting at the end of Jan for parents and carers of children who have suffered from Encephalitis.I never anticipated the magnitude of the after effects of this terrible condition.
YES. Our stories are somewhat similar, only you’re further down the road than I am. In August of last year my 5 year old son was diagnosed with antibody-negative autoimmune encephalitis. He was in the hospital for the better part of September and October. He’s stable and no longer having seizures (on Keppra), but has not yet regained his ability to speak (only a few words), and is VERY emotionally volatile now. He should be back in kindergarten, but that’s out of the question for the time being, so he’s home with me, his 2 year old brother and his “working from home” dad 24/7…
Like Alice, my son has minimal ability to regulate his emotions. In our case, he seems to go weeks being “ok”, and then goes through a few days at a time having monstrous temper tantrums, and being totally uncontrollable, and even physically violent. These days are hellish for everyone else in the household. They leave me feeling guilty, as I know he can’t help it, and yet I do lose patience and need breaks from the chaos sometimes. (12 hours plus of listening to intermittent screaming from a hysterical child can break a person.)
I too have longed for words of encouragement, and have been heartened by some of the positive recovery stories told by others on these boards.
I wish I had something meaningful to tell you right now—all I can do is commiserate and tell you I completely understand what you’re going through. (One of the reasons I am less than articulate tonight is because today was one of my son’s “bad” days. I’m feeling exhausted and demoralized.)
I suppose the Zen approach to this situation would be for us to fully come to terms with the fact that our children’s lives, for the time being, are going to be very different—not like other kids’ lives, and certainly not what we had hoped for them. (Don’t know about you but I’m not quite there yet.) Now that doesn’t mean—for the vast majority of kids recovering from encephalitis—that life can’t be (eventually…) overall happy, worthwhile, and even productive. But for now we need to learn to walk in the dark.
Easier said than done, I know. If only I could practice what I preach.
I'm sorry to hear about your son, and I know exactly how frustrating it is to know that they can't help their outbursts, but yet not react to it. I think I handled the actual Encephalitis itself far better than I've handled the after effects of it. It's almost like you feel a sense of loss as they aren't the child they used to be. That being said, Alice is such a vibrant and charismatic child that the dark days (and believe me there have been many) are outshone by her light. I'd love someone to tell me that by 16 Alice will be a settled young lady and thriving both educationally and emotionally, but I guess that's just life, we have to watch, wait and learn day hy day.
If you want to ask me anything at all. I'm here and I know how you feel.
I may well take you up on that offer. And you too: PM me any time!
The seemingly endless recovery period is turning out to be harder on our family than the days in the hospital. I think you’d have to be a saint to never respond with impatience.
Another frustration is constantly having to explain to well-meaning acquaintances and family members that no, our son is not “ok now.” Sure, he’s not having a complete neurological collapse in the hospital, but he’s still struggling, every day. I dislike these interactions because I don’t want to be perceived as whining (or whinging, for the UK audience here 😉).
I hope Alice’s seizures and ADHD are (getting?) under control. She’s a beautiful child.
I'm an advocate for trying to get members of the public, parents with neurotypical children to change their ideology of children like Alice. What presents as "challenging behaviour" to others, they feel gives them a right to brand such kids as "naughty". They don't care to understand the complexities of the minds of these little ones. And you are not whining or whinging at all hunny, you are displaying the truth of your feelings and emotions. I do that on a daily basis, trust me.
I managed to get Alice's story in a magazine over her and in Australia to try and raise awareness of Encephalitis and it's effects.
If I can save at least one child or person, by raising awareness I'm doing my best. The recovery period is far bigger than I ever anticipated and I think more could be done in supporting family members with this. We have the Eden Dora Trust over here in the UK which is a charity set up by Petrina (her daughter was 6 when she had Encephalitis and is now 17). She's been a great support because like us, she understands how life changing it can be for both child and family members.
I will Google Eden Dora, and look into this organization, thank you. Oddly enough, it wasn’t on my radar, though I follow the UK Encephalitis Society on Twitter, etc.
The 2 weeks my son was in kindergarten here in an L.A. public school district (before his medical breakdown) were absolutely miserable. I don’t expect teachers to have the time to learn all the details about their students’ medical issues, but it would be nice if they showed a tiny bit of compassion. My son was having gelastic seizures behind his mask (yes, they mask 5 year olds all day in Los Angeles public schools…also 2 year olds in preschool), then having “accidents,” and the school admin would leave him in a room by himself, soaked in urine and dazed, and call me to come get him. Suffice to say, we are done with the kindergarten here, for a number of reasons…
Do you have a link to Alice’s magazine story, by any chance?
I'm attaching the article now hopefully it will come up. I can't believe a school treated your little boy in such a terrible way. I hope you gave them a big piece of your mind. Yes the Eden Dora Trust - Sheffield. Give them a Google. There's other children's stories and parents speaking of their experiences.
I am a survivor of Equine Encephalitis (6 years old) several weeks in the hospital. Seizures for perhaps a year.
Jump to today. 50 years old. Remarkably healthy in about every way. Haven’t had a seizure since my childhood. Graduate Degree from a strong university. Socially “normal.” Married. Kids. A job I love. And very happy.
My only discernibly problem has been a remarkably crappy auditory memory. Truly an “in one ear out the other” type thing. For me it has been learning adaptive skills. Namely note taking, preferably pictures, doodles, about anything to use my other memory pathways that are good. I don’t even really need to revisit the “notes” that are pictures. The very act of writing them and seeing them ascribe them to memory.
I recognize the short term and long term brain damage that can happen with encephalitis is incredibly unique to each individual. The important thing is to lean into the adaptation that help us not just survive but thrive.
There is a light at the end of the tunnel and many other lights to illuminate the way.
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