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dd in hospital need help. re treatment possible complaint. what to do - help us please!

241 replies

hospitalworry · 14/04/2015 20:56

i will try and give everything i can here - so it will be long
dd home from uni last week. fine happy etc. planning to go back friday. its not far (1- hour public transport) so just assumed she'd gone back when i got home from work friday as she has a p/t job in a club and i know she was working friday. anyway. sunday rolls round and i think -i will go in her room and see what a tip it may be. (door had been shut). see her on the bed. obviously not okay. she is diabetic and i thought it was something called DKA which is serious and needs taking to hospital which i did. she showed signs that it may have been dka - which were - severe confusion/incoherence, urine on the floor - obviously wet herself, couldnt find her blood testing kit so erred on the side of caution and took her in.

when at a and e , they admitted her. she was BORDERLINE dka - for those who are in the know blood ph was 7.35 and bm 19. however most concerning for ME was her inability to communicate.

anyway - ends up on hdu (high dependency unit) on sliding scale (insulin stuff etc to sort diabetes stuff out) and drip and catheterised - what i would expect.

monday morning i go in prior to work early.
miles miles brighter and apparently her bm is now down to 13. although this is where it is very very apparent she CANT talk - literally. and although seems to understand me (to an extent) difficulty responding . i tell staff this and get told she is probably in pain and doesnt want to talk (although with a 1 staff to 2 patients ratio on this ward i really shouldnt have had to tell them and this sounds like BS)
husband sees her lunchtime - he sees how bad she is too and he raises it with staff - they say - has she got psychological problems, and maybe she is an elective mute! NO
that evening I go in and see her and she is million times brighter but she still cant talk - again raise it with staff - told she is quiet and doesnt want to - i say no actually i think there is something wrong. when given her meal - she can use her fork in her left hand but no fine motor skills in right - told they hadnt noticed (forgetting - i asked at breakfast - had they considered that she might have had a stroke - was told they she had been assessed and nothing facial to indicate a stroke and reflexes fine, and if it was a tia then it wouldnt show on a ct scan so no point. she had a small fit that i called the nurse and she saw the end of it.

told that the neuro centre staff from a local unit visit our hospital on a tuesday and she MAY be referred depending on what the consultant thought.

today(no change in her)
met with consultant who (along with the other input we had had) gave the impression that it was her wanting to not speak.
he said that if it was neurological and she was unable to speak she would be more distressed . (she smiles and nods a lot) He actually said she might be putting it on or choosing not to speak . I said - what about the fit- he said that people COULD fake a fit. he said that obviously they would go with the advice of the neuro - but the protcol is if they thought it might be organic they may order ct, mri or lumbar puncture, if they didnt deem it neccessary after an examination she would be referred to psychology.
the inference being - this is what he thought it was.

she did get seen by the neuro - who ordered an immediate ct scan (at 7pm) not waiting till morning. it showed unexplained abnormalities, she is due for a mri in morning . and has been put on klexane which apparently prevents clots

my question is am i being unreasonable to think a 20 year old presenting like this - and with parents pushing - should have been noticed there was a problem, beliieved when we said - its not normal and we think theres a problem, and to want to complain - especially if it causes anything that causes her long term problems.

why wouldnt the klexane be prescribed before neuro saw her, why didnt they believe me, why did they intimate she is faking it.

advice please

OP posts:
spiderlight · 16/04/2015 10:17

Thank goodness she's somewhere where it's being taken seriously now! Thinking of you all.

chocolatelife · 16/04/2015 10:18
Thanks thank God it is going better now hope you kept a diary otherwise you will forget.
cashewnutty · 16/04/2015 10:27

What a terrifying ordeal for both you and your DD. I hope she makes a good recovery. It sounds like she is in the right place now.

Justyouwaitandsee · 16/04/2015 10:46

Meant to say, my mum's encephalitis was Herpes Simplex Encephalitis. Don't worry about the herpes reference, it apparently lays dormant in anyone who has suffered chicken pox and for unknown reasons can come back to life suddenly and without warning, for example triggered by a seemingly innocuous cold...

hospitalworry · 16/04/2015 13:06

That's interesting justyouwaitandsee
She may have LP this afternoon. But is on antivirals anyway
She has problems with speech and also understanding.
Funny today
Is took out toothpaste and brush which she used -fab
Then passed her deodorant which she tried to spray in her mouth!
And face wipes which she tried to wipe around in her mouth!

OP posts:
Justyouwaitandsee · 16/04/2015 13:22

Aww yes, that all sounds familiar. It is good to try and keep a sense of humour as we found it really helped us cope with the scary symptoms. We kept saying things like, we must write that down so we can tell her when she's better. We still tease her about some of the things she did. One example was similar to your daughters eye rolling at other patients. An elderly lady in the opposite bed was snoring loudly with her mouth wide open. Mum indicated she wanted some grapes a visitor had brought moving nearer to her. But eventually I t became clear she wanted to try and throw the grapes into the lady's mouth rather than eat them. It was like she became a naughty/cheeky child. Glad you are now able to start making a bit more sense of the situation!

DownWithThisTypeOfThing · 16/04/2015 13:36

OP really sorry I haven't read the whole thread but I wanted to post quickly - I have read most of your updates though.

Girlwhowearsglasses
Oh my god it sounds like they're treating her like a ten year old.
This is incorrect - my 10 year old had a similar presentation and was throughly examined - even after all of the initail tests had been done they persevered and would not rest until they had a reason for why he had presented that way.

OP, my 10yo had a version of encephalitis and was exactly as you say - stroke-like symptoms and couldn't speak although seemed aware of what was going on. I kicked my self for delaying taking him in but the consultant said to me "the MRI showed only a very slight change - if you HAD brought him in earlier there's a chance the MRI wouldn't have picked up any change at all and we'd have sent him away thinking he was fine" - whether she was just saying this to calm my nerves I don't know but it seems to make sense.

10yo has now made a full recovery (treated with steroids and physio) - hopefully this will be the same for your DD.

I was thankful at the time that we were able to access a reknowned faccility and they were able to make a swift diagnosis and treat quickly. Normally I HATE people complaining about our wonderful NHS but if your complaint means that better training is given to prevent another family having the same expereince then it's the right thing to do - afterall, why should my son have received better treatement than your daughter just because we happen to have a differnt facility local to us?

DownWithThisTypeOfThing · 16/04/2015 13:40

And yes, my son had the anti-virals too.

Treatment was given before the diagnosis was confirmed (I think the diagnosis was confiemd 2 days after starting the treatment). He also had a lumbar puncture.

hospitalworry · 16/04/2015 13:49

There is a study we agreed on her behalf for her to be part of (can back out at any time when she is able to understand) by Professor Tom Solomon about encephalitis. We were told it is very underdiagnosed in the district hospitals. Tried to do a link..
Google Tom Solomon neurologist

OP posts:
DownWithThisTypeOfThing · 16/04/2015 13:53

Yes I think my DS may be part of the same study - we fill in surveys every few months. A few weeks after he was discharged we met with a research nurse and answered some fairly extensive questions - going right back to when I was pregnant!

I think she's in good hands now - try and stay positive.

On a practical note - have you let her uni know? My son had a phased return to school and had to attend out patient physio appointments for a while after. I'd say it took him a good few weeks to feel less tired and probably 6 months to be completely normal.

DownWithThisTypeOfThing · 16/04/2015 13:57

Ah just googled - the survey my son is involved in is run by Oxford uni - maybe different because of his age?

Sorry, don't mean to derail. Hope things start looking up soon.

hospitalworry · 17/04/2015 22:02

If anyone wants to know -
Eeg showed almost constant seizures (not visible signs) resistant to anti epilepsy meds
Currently aggressively treating for possible autoimmune encephalitis
But herpes simplex encephalitis results not back. Also load of bloods.

OP posts:
mousmous · 17/04/2015 22:05

poor you. and poor dd.
hope you get answers soon and can power on with effective treatment.

wanttosqueezeyou · 17/04/2015 22:05

Yes we want to know!
How is she?

TheoriginalLEM · 17/04/2015 22:06

so sorry you are going through this - i hope she is better soon. Flowers

ItsAllKickingOffPru · 17/04/2015 22:06
Flowers

I'm sure that's not the news you wanted to hear, but the Walton is absolutely brilliant at dealing with neuro/encephalitis.
Wishing your DD and you well. x

Christinayangstwistedsister · 17/04/2015 23:03

Keep posting as we are all very concerned

Flowers
ginpig · 17/04/2015 23:48

You poor thing.

DH is a neurology Spr and has just got home from work. I gave him a quick summary of your situation and he is very emphatic that Tom Solomon is the leading expert in the country on treating and managing encephalitis. So be confident that your DD is getting the best possible care.

I really hope she makes a speedy and full recovery Flowers

shouldnthavesaid · 17/04/2015 23:57

I've also worked 20th patients with encephalitis caused by herpes and by viruses. Can be very scary but everyone I've looked after was almost back to normal when they left our unit :)

imjustahead · 18/04/2015 00:20

op. just found and read your thread, am sending positive thoughts for you and your dear daughter. xx

ThenThereWereEight · 18/04/2015 00:24

Good luck OP

DownWithThisTypeOfThing · 18/04/2015 00:31

Yes thinking of you OP Flowers

Babyroobs · 18/04/2015 00:46

I don't understand why they waited for neurologists to order a scan or surely they could have arrnaged for neuro to see her earlier? . I can understand not giving cleaxane until a scan done as if she had had a small bleed into brain or something it could make it much wors but neurological opinion should have been sought much sooner given the symptoms. I hope she improves soon .

giraffesCantBunnyHop · 18/04/2015 07:03

So annoyed for you that other hosp tried to say faking!!!! X

Delphine31 · 18/04/2015 16:54

No advice but just in case it offers some reassurance, my brother had suffered several episodes of autoimmune encephalitis over a number of years but since being put on immunosuppressants 5 years ago and blood monitored for the offending antibody, he hasn't had another episode.

Good luck. It's horribly stressful and very distressing but it sounds as though she is in the right place now.

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