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

[hospitalworry]

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

did you get a copy of the CT report? tho clearly an MRI might tell you more. a fall and consequent concussion could be a possibility? perhaps alongside or as part of whatever else is going on.

can you get any yes/no response or communication/awareness?

She says yes and smiles about almost everything
Agrees or sometimes does an eye roll like an OMG thing. Or yesterday said ew ew ew when a woman in the next bed made disgusting nasal noises - so she understood that!

a yes/no is a good start...
try getting a no response clearly. ask her if she wants something you know she hates. but the hosp should send along a speech therapist to assess and offer strategies. .

I didn't mean says yes
I mean nods and smiles
Even if it isn't the right response

Doesn't do no.
Anyway back later on here
Thanks so much everyone this is all so helpful and I feel a lot less lost

OP for you and your dd.

I haven't got a lot of advice except to say that my xdh had a stroke in his 20s and didnt show any of the 'normal' signs of stroke. This was therefore ignored by the hospital for 48 hours (after GP had referred him up there with suspected stroke).

His CT scan showed this.

He was too late to have any of thebusual drugs that could have possibly helped reverse the damage. He didn't show any symptoms that your dd has though. From what I hear, motor and language symptoms from strokes often respond to therapy.

I hope she recovers soon and you vet some answers. But yes. Complain.

ah ok - my friend's daughter when she got concussed was v confused.

these things do take time. whatever the cause. ask the doctors again if they think it's some kind of stroke. ask to see the ct report. call headway www.headway.org.uk/home.aspx for phone support even without the diagnosis. or www.stroke.org.uk/ they both have phone helplines.
i hope you get answers soon and that the therapists start arriving at the bedside with some good ideas and strategies.

plan for several weeks recovery and how that might be managed, let uni know etc.

and look after yourself, get some rest and keep eating.

My aunt works in the Walton. It is an amazing facility and the staff are brilliant. Can't say the same for the hospital formerly known as Fazakerley...

Hospitalworry - I would say don't push too hard, too fast. There is plenty of time to work on communication. Rest and sleep is really important in order for her to recover, especially if it does turn out to be neurological.

For several days/weeks my mum slept for most of the time. We limited speech as it seemed to tire her out or confuse her. Your daughters behaviour does sound very similiar. In the end it was probably harder for us than her (she doesn't remember anything of the time in hospital).

I would note down any progress or small reactions she does show. Eg. My mum said oww when a doctor hurt her (in order to try and bring her round)

If she is scribbling then give her the opportunity to do that and praise her for it as it is showing motor skills. Mum had a similar stage when she scribbled on a notepad. Later she wrote real words but could tell us what the words said.

Like someone else said, slow speech down. Consider limiting visitors and keeping conversation to a minimum. Use short sentences to remind her where she is and what is happening and who is there.

For a few days we made choices (eg food etc) for her, but gradually showed her juices etc so she could try and choose herself. On some days she would be quite 'with it' but then tire herself out and sleep throughout the next day. Her symptoms were very up and down and quite unpredictable.

Other things you could try is spraying her favourite perfume or playing her favourite music to stimulate her other senses.

In terms of things to ask, I would suggest:

• requesting a lumbar puncture (be aware that it can take quite a while for the infection to show and you might get a false negative in the early stages)
• asking why AVs were prescribed and what conditions they might suspect? (Be aware they might say it's just precautionary but I would still push them)
• you could specifically raise the possibility of meningitis and encephalitis (uni students are particularly at risk of these)
• push for the mri, emphasising symptoms are still ongoing and the abnormalities in the ct scan which remain unexplained
• push for a transfer to specialist neuro unit or to be seen by a specialist
• you might want to ask about the possibility of any ongoing risk of seizures especially 'absent' seizures which might affect her. Worth looking up the symptoms and asking if she needs any anti seizure medication

In terms of recovery, again try to take it day by day. Mum ended up spending around 5/6 weeks in hospital. In the early days, we were preparing ourselves that she might die, then I was preparing myself in case she survived but was left unable to talk or walk, eventually she recovered remarkably quickly as her brain healed itself. In fact by the time she came home to most people she seemed back to her normal self.

Neuro conditions seem to affect people differently so you can only wait and see and do everything you can to help them recover. I would say getting a firm diagnosis and appropriate treatment is the first priority.

Please feel free to PM me if I can be of any further help!

Actually, Just is bang on the money here. My dad's BIL (my step uncle) had a stroke and I remember him being inconsolable, and I kept saying... He just needs to rest, it's too early, his brain swelling needs to go down and he needs to recuperate, you've no idea how he'll be in a month. If it is neuro, there could be all sorts of swelling.

I never even thought of this when I read your thread until Just said it. There's great advice in her post.

OP I am really pleased that some informed, helpful and above all kind people have found your thread and replaced the utter tosspots you had to deal with earlier.

Wishing you and your dd all the best

OP good news that your DD is being moved to a specialist unit. Please do still push for the mri and for her to be treated as a priority. She is your priority and you need to do everything possible to make her the consultant's priority too. They need to tell you what they think has happened and what conditions/incidents they are ruling in and out. Then you can ask them to explain how the mri will impact on their diagnosis, and how delaying it will impact. I know on MN we all talk about not wanting to be that parent when it comes to speaking to schools, etc. When it comes to medical care, you absolutely have to be that parent.

As for your concern about the health care professionals reacting badly to a complaint and it impacting on your DD's care, I can only say that has never been my experience. I have a massive family. Over the years we have had cause to complain about the standards of care given in hospital. the treatment of my DF when he had terminal cancer reduced us all to tears as it was so appalling

However, in each and every case where we have had to complain or push for a certain treatment, the standard of care improved dramatically.

Your daughter's experience chimes a bit with what happened to me when I last gave birth. I am also diabetic, but ended up with pre-eclampsia that wasn't taken seriously, and then ended up have an eclamptic seizure. Although this is a different situation, after the seizure I had quite bad, continuous hallucinations for a couple of days (thought my baby was an alien, midwives were trying to poison me etc). But according to my husband, whenever medics spoke to me, I would just smile and nod my head. I just wonder if your daughter may not be speaking if she is confused by what's happening and so is not speaking as a result. Also, it is brilliant that you are advocating for her. I found in hospital that if you have diabetes, that's all anyone sees, as if nothing else could be the matter. But also, diabetes is not always dealt with well in hospitals despite being not exactly rare. While in hospital I had a serious hypoglycaemic episode. My husband was the one to find me unconcious, not the hospital staff. I also hallucinated after that (!) so I also wonder if something like DKA could trigger that (and the upsetting lack of speech). Maybe your daughter's confused, but also sees you there and wants to reassure you. Good luck, I hope your daughter feels better soon xxx

Good luck with transfer. Hope all goes well.

Have dealt with many cases like this. A few points...

CT is fairly blunt instrument. Unspecified abnormalities means nothing. And the fact that the MRI was cancelled very likely suggests the changes were minor and judged insignificant on subsequent review.

The most likely pathology - if there is pathology - given age, is encephalitis. Other differentials include new onset seizures and prolonged post-ictal period. Or prolonged hypoglycaemia/hyperglycaemia and subsequent cerebral oedema. Hypoxic brain injury unlikely given the level of functioning described. The 48 hour lag time is fairly key. If she was comatose/lying on bed for that length of time, it is not surprising there is a prolonged recovery as some degree of cerebral oedema whether or not it's showing on scans is to be expected.

As well as excluding pathology, psychology does need to be considered. And some of the reported signs/symptoms do not totally fit with an organic cause - e.g. a patient able to say Ew ew ew to a auditory/visual noxious stimulus but not able to respond appropriately to a question - i.e. nodding/smiling at everything - is a little odd.

I'm not sure the management here was as lacking as the thread contributors here seem to be suggesting. The scan has not helped or changed things here. Without a review of the clinical notes, its difficult to tell but the fact is with a lot of vague neurology especially in a critical care unit, especially in someone with deranged biochemistry, the key is to observe it before rushing in with a scan. And they did this in a suitably high care environment - HDU. And they are transferring her to a centre with tertiary neurology input (probably un-necessarily).

I think I'd be most interested in timing of the start of the antibiotics (you may have mentioned this, I haven't read the whole thread in detail). In a diabetic with the presentation you described, I'd be looking for a precipitant and starting antibiotics early. I wouldn't have scanned (unless focal neurology noted during medical examination), I probably wouldn't have LP'd.

Neurology input is likely to be fairly non-specific here. They'll continue to observe, maybe do an LP, maybe repeat scan, continue/start anti epileptics and antivirals. The highly likely outcome is a spontaneous improvement. Unless psychological symptoms are a contributing factor.

Still, if you have concerns, you should put them in an email and go through patient liaison. They will forward them to the appropriate heads of service.

Oh, OP, please do not nlame yourself - you can make peace with yourself later. In England go and see PALS. If you're in Scotland, go see the Patient Advice and Support Service provided by CAB.

OP I'm really sorry to hear what has happened. Concentrate on DD and ask for her consultant's name and if haven't met, speak with them. If have met, can you stay for a ward round and speak to them again then and be confident and assertive in your concerns?
It's not very possible to say what has happened from the descriptions here but could be various things. I am not clear why there has been no lumbar puncture or MRI. Ask them to explain the CT findings properly to you. Has she ever taken drugs? does she have type 1 DM? if she was drinking at a club or similar .. although she is your child, doctors won't reveal everything to you unless she agrees as she is an adult. I really hope she makes a quick and complete recovery.
If you wanted to complain, perhaps now is not the time but I'd go through PALS as a first instance/ write a letter of complaint to the chief exec

Update
She did end up having the mri.
Spoke to registrar at Walton this evening when she was there
Summary
Dr from neuro who saw her on Hdu noticed speech and right sided weaknes also high pressure behind eyes. Ct ordered straight away.
Nothing conclusive.
Mri showed swelling of brain tissue in patches - not the whole brain. Thinking encephalitis maybe. Testing for various viruses tomorrow from number 1 most common of herpes simplex (apparently!) through hiv etc and back. Also more scans.
Initial assessment by doc - some understanding difficulties as well as speech stuff
Eg could followverbal instructions to close eyes lift up arms
When shown a pair of glasses in front of her and asked what do you do with these (she wears glasses) a shrug/blank but when he put them in hospital her hand and asked the same, she put them on.
Wrote instructions like 'shut your eyes ' no response. And confused.
Did actually say 'i don't know ' at one point
They were happy she Said 3 words that go together.
Anyway
Walton so far - awesome. Everyone has been ridiculously excellent.

on reflection I agree with straightalker
hope she gets well soon

She isn't having lumbar puncture YET due to risk coz I think something to do with either high pressure behind eyes or swelling in brain?
Anyway the great thing is doc thinks it's treatable.

BTW
Re the differential responses I was told tonight it's to be expected due to something like (can't really remember) the patchy swelling and where it affects the brain

sounds like they are assessing her thoroughly OP which must be a relief - sounds like a type of aphasia- is her language always fluent on the times she speaks? anyway, I hope she's back to full health shortly.

Thanks dr lego
It is a major relief to be here
No not always fluent - held up a pen and she called it a funny non word.
She's in the right place now
Thank god. (even though I am not religious)

Hi hospitalworry - that all sounds really reassuring, and like you finally got some clear guidance on the treatment plan they're following.

In terms of the lumbar puncture, like I mrntioned, it can take a while for things like encephalitis to show so they do often begin AVs treatment before a formal diagnosis is given. (I think it took us 5 days to get it confirmed as treatment needs to start well before then).

Some of the strange speech/understanding examples you mention fit with what we observed with mum - like your daughter with the glasses, and my mum with the spoon. Other examples including her reading the word 'shower' on her ensuite door over and over again but in a strange voice without seemingly understanding what the word meant, writing real words on a pad of paper but not being able to read back or seemingly understand what she had written. At one point she couldn't recognise me, her daughter but could recognise my partner, her then 'future son in law'. The doc explained this is because older and newer memories are stored in different parts of the brain. Having studied speech, language and the brain I actually found her symptoms very interesting (albeit very scary to be living through).

As others have said since, and I said earlier, it does sound like they are following a sensible treatment plan. It is important for the brain to fight off and heal any infection or swelling it is currently experiencing/suffering. Don't push her too hard but write down and observe as much as you can - this will help you and the doctors build a better picture of her condition and track her progress (following instructions, understanding what to do with her glasses and saying I don't know are all positive signs!)

Now treatment is being given and specialist support is in place then progress her progress might surprise you, or it might seem to take time - but given the level of what her brain might be experiencing, it is important that she recovers and heals at her own pace. Hopefully her young age and the fact she is getting such good treatment will both now work in her favour. My mum recovered her speech and understanding fully and made an incredible recovery, and found the diary we kept very helpful for understanding what she had been through and comprehending what had happened.

More for you and your daughter.

I saw a couple of cases of herpes simplex encephalitis when I worked on a neurology unit many years ago. It does sound very like the sort of history. The good news is they did get better but it was a long hall. Good luck and thank goodness you're in a unit that is taking her seriously.

there's a website here witha contact phone line www.encephalitis.info/ If you or a relative/friend have been affected by Encephalitis and you require advice and information in respect of the illness and its long term consequences, please contact our support team via one of the methods below.

Email: Support

Telephone: +44 (0)1653 699599

Skype: Contact the Support Team via Skype, by adding us to your contact list. Search for Encephalitis.Contact to find us

Address: 32 Castlegate, Malton, North Yorkshire, YO17 7DT, United Kingdom

hope things improve from now on.