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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:
MissDuke · 15/04/2015 14:19

Op this is dreadful :-( Is your daughter able to communicate at all?

Justyouwaitandsee · 15/04/2015 14:42

Ah - hospitalworry glad to hear she is on anti virals now. We were told that it was better to prescribe them before a viral cause was even identified as it was better to get the treatment started just in case.

You will have seen the docs tried to cancel my mums MRI due to perceived 'slight improvement' - but we kept pushing for this as it is clear that something is/was happening at a neurological level. I would push this with the most senior person you can find (we thankfully didn't have to thanks to the proactive action of that one junior nurse). Has she had a lumbar puncture test do you know? This could identify or rule out a potential viral/infection cause?

I would recommend seeking advice from Headway (re brain injury/neuro symptoms) and potentially the encephalitis society - now they have started anti virals it seems like they might be covering off the encephalitis/meningitis possibility. (Did they say why AVs had been prescribed?!)

duplodon · 15/04/2015 14:56

Please ask for an adult speech and language evaluation too. I hope this turns around Asap. How terrifying. Agree psychological causes are what you look at when everything organic has been ruled out.

TinklyLittleLaugh · 15/04/2015 15:19

I know nothing about the medical side of this, but just to say, we have exactly the same domestic set up as you OP with a largish house and young adults who come and go. My DS is in Uni close to home and comes and goes; my daughter works in a club and often sleeps most of the day or stays with a friend or boyfriend, and I don't go into their rooms when they are not there.

People having a go at you for not knowing your daughter was still home are talking nonsense. And I know you are shrugging it off because you have bigger things to worry about, but please, when this has all been sorted, don't go beating yourself up about it.

Hope you daughter is on the mend soon.

cathyandclaire · 15/04/2015 15:22

I've had a look but I can't see if your daughter has had a lumber puncture yet, has she?
Hoping for a speedy transfer to a specialist unit and some answers, I would think a psychological cause is very low down on the list of differential diagnoses at this stage.

cestlavielife · 15/04/2015 15:23

can she type on an ipad or write things down? try another form of communication

cestlavielife · 15/04/2015 15:28

www.therapy-box.co.uk/predictable.aspx is a great type to speech app but it isnt cheap - however if this continues and she can type but not talk then i would consider it.

hospitalworry · 15/04/2015 15:41

She hasn't had a lumbar puncture
In need to write a big list of questions to ask down
Do you think :
What different diagnoses are you considering?
Why has the mri been cancelled if a lumbar puncture has not been used to positively identify a virus?
Have you or can we request a SALT referral for evaluation?
What else?

OP posts:
hospitalworry · 15/04/2015 15:47

She can't really hold a pen
She scribbled on her sisters ipad but just scribble
Looked blankly not understanding what a pen and paper were for
Also she is an art student at uni
I wonder about timescales on recovery
When would i start thinking about whether to tell her accommodation she isn't coming back this year as she pays a lot of rent?
Re the type to speech. I don't think she is up to it (yet) i know grandparents would pay though

OP posts:
Ineedacleaningfairy · 15/04/2015 15:51

How worrying for you all, I hope your dd makes a full recovery.

I have a diabetic relative who occasionally has seizures due to low blood sugar, for a couple of hours after the seizure her memory is odd, it's like she is living in her life 3/4/5 years ago, I said I'd phone her job and she was really confused that I was not phoning the place she worked at 4 years ago, she had no recollection of her current job at all. The memories do come back but it takes a while.

duplodon · 15/04/2015 15:51

There are some communication boards for hospital here: www.amyspeechlanguagetherapy.com/communication-boards.html

duplodon · 15/04/2015 15:57

If she isn't understanding or speaking as normal it's highly likely that she won't be able to communicate through writing or drawing right now.

Picture choices can help, but you may need to offer fewer choices.
Try to slow down your talk.
Use simple sentences, but without talking down - Simple, clear, in sequence...
Chunk sentences
Show and do rather than relying on verbal communication
Give choices : do you want water or tea? Etc
Gestures

Sorry, it's a long time since I worked with adults so this is very basic

cathyandclaire · 15/04/2015 15:58

I also don't understand why the MRI was cancelled if the CT showed 'unspecified abnormalities' surely they would want to further investigate this?

Definitely think you are doing the right thing compiling a list of questions, it sounds like she needs to be under another team. Difficult to talk about timescales without a diagnosis but like a pp I wonder if the (relatively, compared to her symptoms) mild DKA may be a result of another illness, rather than the cause.

Number3cometome · 15/04/2015 16:04

OP this sounds dreadful, can you push for her to be moved to another hospital? I would not be satisfied.

hospitalworry · 15/04/2015 16:43

She is moving to a specific neuro unit

OP posts:
hospitalworry · 15/04/2015 16:44

Walton for anyone who can give me advice based on that?

OP posts:
chocogirl77 · 15/04/2015 16:53

OP is she currently at Whiston? If so, be very glad she's being moved somewhere else.

ItsAllKickingOffPru · 15/04/2015 16:54

They will take her symptoms a lot more seriously than the current hospital at Walton. It's a centre of excellence and they will do all they can.

auntpetunia · 15/04/2015 17:04

Walton neuro are amazing. anyone I've dealt with there has been fantastic.

auntpetunia · 15/04/2015 17:06

Oh op is she currently in whiston ? You will see a whoke change of care at walton they are amazing. My Consultant is fab and anyone else I've spoken to who attends has nothing but Praise.

cestlavielife · 15/04/2015 17:07

walton is v good. my father had neurosurgery there.

get the hospital on call speech therapist in with speech boards and choice boards.

print out the ones posted above.

if not make your own at least start with a big YES and NO on separate A4 so she can wave to one or the other and you ask some yes or no questions.

cestlavielife · 15/04/2015 17:10

given she could potentially commute to uni for the Summer term i would call uni and cancel accommodation if you can. you might not be able to .

has she ever had anything like this before?

once you know diagnosis you may have better idea of recovery time but recovery from a significant virus could take say a gradual process over three months rather than 3 weeks and back to jumping around... she would still be tired... so think in terms of other arrangements for summer term eg living at home going in few times per week only. online or distance learning with the uni.

cestlavielife · 15/04/2015 17:12

could she have fallen in her room and got concussion?

hospitalworry · 15/04/2015 17:12

Not Whiston

OP posts:
hospitalworry · 15/04/2015 17:15

She had a small bruise (Small) by her right eye (crows feet area)

OP posts:
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