AIBU to be worried about Meningitis? Any nurses/doctors?

[87SPD]

Hi there, sorry long post but I am really concerned and need advice....

So my DD12 is Autistic and struggles to communicate feelings and this includes pain. For context, she has previously broken her wrist (requiring surgery) and did not cry, she has had appendicitis and didn't show signs of discomfort/pain until they had burst and it was only detected through a blood test as the doctors were about to send us home.

The past 7 days she has had flu like symptoms, she is lethargic, got achy muscles all over, bad headache, on and off blurred vision, cold feet, hot body and a painful neck and upper back. She doesn't have a rash that I can see but is extremely pale with slightly swollen eyes.

We firstly thought she had covid but test was negative, then thought must be a viral or flu. The last 24 hours she has become even more lethargic, holding onto her neck and can't get comfortable because her back is in pain. She said the light is making her headache worse. Usually if she has a typical cold etc she soldiers on as she absolutely hates being out of her routine (she is football mad and plays 4 times a week which she never misses, even when she has an injury she pleads to carry on playing) This week she hasn't even had the energy to watch football let alone play it which is highly out of character. I tried to see if she could play a game of cards yesterday which she started but then lay down and went to sleep again this is out of character. She has been having regular paracetamol and ibuprofen for the pain.

Anyway, last night seeing her getting worse I called 111, they advised that she needed to go straight to A&E. When triaged her temp was 37.1 after calpol and heart rate 99. Not medical at all so not sure if that is relevant! But after a further 4 hour wait of her clearly in pain the doctor spent all of 5 minutes with her. I explained that she has autism and if asked to do something she will do it even if it causes her pain and she doesn't make it clear she is in pain if that makes sense?

I felt he didn't take this into consideration, he moved her neck from side to side, she said "ow" a couple of times and he said does it hurt and she said yes. She said her left hand and legs were weak and she said she couldn't feel her feet which were freezing cold - he didn't even touch them. He said because she could push and pull his hands that the weakness was subjective! He asked if she was eating and drinking, I explained that she isn't eating well but drinking a lot of water as I am constantly refilling her water bottle. He said she is dehydrated as her tongue is really white and she needs to drink water!

She said the light is making her headache worse but he replied that she could 'tolerate' the light in the room and was walking without wobbling etc. Was told she has a normal viral infection and if no better in 2 days to go back. He didn't recheck temp, or even consider a blood test etc?

AIBU to be worried still that she could have meningitis? I feel he didn't listen to me and didn't take into account the fact that she has autism and doesn't communicate well. He kept cutting me up when I was trying to explain this and just rushed me through standard questions.

She slept in my bed when we got home and has been moaning in pain in her sleep every time she moves, she has got through another bottle of water and her tongue is still white. She is back asleep now, her temp is 37.5 at the minute and she said her neck, back and head are hurting so I gave her more calpol for that.

Has anyone got any experience of viral infections like this or of meningitis? Or any nurses/doctors who can ease my mind that the doctor I saw last night did everything correctly?

Thank you for making it through this long post, I am extremely tired so apologies for the awful grammar...

TIA

If you aren't happy op. Trust your gut and bring her back andbseek a second opinion. I hope she's ok

I'd go back to A+E to be honest.

@Tempone thank you - I am keeping a close eye on her and will head straight back up if she gets any worse. I didn't think a normal viral infection got worse each day which is why I am concerned but I am certainly no medical expert!

Just wish they would listen when I tried to explain her communication issues involving pain. Thanks again, appreciate your comment x

It does sound like proper flu, but you know your DD best, and if you're not happy definitely go back for a second opinion. Mums tend to know when something is wrong.

I would go back, I wouldn’t wait for her to get worse.

Our trust has LDA trained nurses (Learning Difficulties and Autism), specifically for this purpose. See if your hospital has this.

If you get brushed off again, ask for a second opinion before you leave A&E.

You know your DD better than anyone, from your description with comparison, she sounds very poorly to me too

Hopefully she is starting to feel better, as others have said - if you’re still worried take her back.

meningitis does tend to be quite fast though, and I know when my brother had it he had a blanket over his head in A and E. His was viral and nearly got missed, he collapsed on his way out after being discharged. Hope you get sorted op

@Seeline thank you, we did suspect the flu but I usually pick up every bug going and nobody else in the house has been ill at all which is unusual. Just worried how short the 'examination' was with the Doctor, at least expected some observation or a blood test just to rule it out properly. I do think if no improvement in her today I shall go back tonight. Hate feeling like a hypochondriac mother but we do tend to know when something isn't right so will follow my instincts. x

@Bunnyfuller sorry to hear your Brother had meningitis it sounds awful. Yes I understand she 'presented' okish but its the autism that I worry is being dismissed and not taking her communication difficulties into consideration. I have read that meningitis happens really quickly which is my only relief in the sense that she is slowly getting worse and not a rapid decline. I do hope your Brother was OK and made a full recovery x

@CheekyHusky thank you, I wasn't aware of that so certainly something I will ask about if I go back. She was only diagnosed last year, she is so compliant and so when told to do something like move her neck she will even if it is causing her pain, same with the light she won't ask for it to be turned off I only noticed because she kept pulling her hood over her head and eyes and falling to sleep. That is when I asked if the light was bothering her and she said it does when she looks directly at it. She is right next to me so will see how she is when she wakes up and more than likely head back up to the hospital if no improvement. Thank you x

@87SPD how is she today?

Sorry only just seen this, she is still not well but I am a bit more eased that I don't think it is meningitis now or surely she would have rapidly declined.

Plus I called the GP to ask for the discharge letter from A&E to provide to the school so it would be authorised absence and it says on there, upper respiratory infection and congested inflamed throat and for follow up treatment to be provided by the Doctor. Never mention her chest to me and its taken 3 days to get her an appointment with the GP today.

So frustrating having such a lack of communication, I understand the pressures on doctors particularly in emergency care but surely he could have explained this to me!

She is still very lethargic and has complained more recently of sore throat and struggle swallowing hence us trying to get her into the GP.

Hopefully they will be able to offer some sort of treatment or advice for her as its been 13 days of her being unwell now and with the communication difficulties its so hard to know what to do for the best or how she is genuinely feeling bless her.

Bless her! How is she today?

That’s bad they didn’t tell you about her chest infection! Did you get into see the GP? Our GPS are great, but our old practice was a nightmare for appointments.

Upper respiratory tract infection means nose and throat, not chest. a&e doctor told you normal viral infection, which means the same.