Something parents should be aware of

[MarnieWasThere]

Has anyone else seen the awful story about Mia Lucas, the young girl from Nottingham who died last year? She suddenly developed hallucinations and dramatic behavioural changes. The hospital didn't carry out a lumbar puncture, which could have revealed that she was suffering from autoimmune encephalitis, a condition where the immune system mistakenly attacks the brain. She wasn't diagnosed until it was too late. 💔
Autoimmune encephalitis is a rare condition, which is part of why cases are often missed. There are several types, and most can be treated successfully if diagnosed early.
If your child ever experiences a sudden and severe change in behaviour; like personality changes, mood swings, hallucinations, other psychiatric symptoms that appear out of nowhere, please insist on investigations so that physical causes can be properly ruled out.

https://www.bbc.co.uk/news/articles/c058ppym6m2o
www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/autoimmune-encephalitis/
www.encephalitis.info/types-of-encephalitis/autoimmune-encephalitis/
panspandasuk.org/

Haven't heard about this case. Poor girl, what an awful way to go.

This condition used to be dismissed as "regressive autism" when it struck young children, causing them to lose skills. I thought doctors would be better at recognising it nowadays. Guess not.

I recently read about a frustrating case: a 6-year-old boy who dramatically changed, couldn't speak and became withdrawn, was first seen by a psychiatrist (?!) who misdiagnosed him with ADHD (?!) and given medication which didn't help, while he continued to deteriorate for months. He was eventually properly treated, but I wonder if he'll fully recover.

How awful 😥

It's utterly tragic, isn't it. Difficult to read about cases of permanent damage. To think, so many kids (and some adults) could've made full recoveries if only they'd been investigated and treated promptly... instead they were shrugged off and left disabled for life.

"regressive autism" my fucking arse.

I also wonder if "childhood disintegrative disorder" could be a similar thing? There certainly needs to be more research. Some of the saddest stories I've ever read.

It's absolutely awful when things are missed.

My son had intussusception last year which was missed initially because it is most common in babies and toddlers and he was 8 at the time. It simply wasn't considered due to his age but if he was a toddler, they would've likely spotted it because they would've considered it in the first place. They instead misdiagnosed gastroenteritis after ruling out appendicitis.

By the time they suspected it, part of his bowel had died and septic shock had set in and he went into multi organ failure. He wasn't expected to survive and very nearly didn't.

That's horrific, I'm so sorry. Your poor little boy 😢. How is he doing now? 💐x

I hadn't heard of Childhood Disintegrative Disorder, but I looked it up, and it sounds so terrifying for those poor children and their families. 💔
It seems like so many different conditions have been put under the ASD label, which surely has to make it harder for proper research to be done.

He's doing well now, thanks. We were warned that since it was so unusual for his age, there was likely an unusual and potentially sinister cause for it and unfortunately, it was cancer that caused it in his case but he has been in remission for just over a year now which is wonderful news. xx

That's fantastic that he's doing so well. 💜 I can't imagine what you all must have been through. 💐