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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:
FuzzyWizard · 18/04/2015 17:16

I know two people who have suffered brain injuries following encephalitis. I second the post earlier that recommended getting in touch with Headway. They are brilliant.

Musicaltheatremum · 18/04/2015 19:03

Thank you for updating. It is good to hear you are in good hands. I must Google Tom Solomon to find out about him, but the fact that another neurologist holds him in high esteem is really good. Hope you're ok.

SirVixofVixHall · 18/04/2015 19:07

Really hope she is improving soon. Sounds as though she is in the best place and getting good care now. Flowers.

Musicaltheatremum · 18/04/2015 19:09

Just googled TomSolomon. He sounds amazing. Done so much. I always remember finding the subject of nervous system infections badly taught at uni in the 1980s we all hoped it wouldn't come up in our microbiology 3 rd year exams. Unfortunately when we turned over our paper it was the main question. I did pass thankfully. He looks a little bit mad too. Perfect for an enthusiastic professor.

Justyouwaitandsee · 18/04/2015 19:21

Thanks for the update! Is she showing any improvement in terms of understanding or communication?

Glad they have picked up on the seizures. Our hospital staff didn't until we specifically asked if this was a possibility. Mum was treated with keppra in hospital, and think she continues to take a cheaper version as a precautionary measure.

SauvignonBlanche · 18/04/2015 19:38

THe Walton's a great place, I spent a month there!
I do hope they sort out your DD. Flowers

MummyPig24 · 18/04/2015 19:42

I have just read the whole thread. How worrying and upsetting for you. I have my fingers crossed that your daughter makes a speedy and full recovery.

My dad recently had encephalitis and it was scary. He could talk although he wasn't making any sense, he lost his balance, wet himself, kept trying to pull his cannula out and leave hospital. Scary stuff. I can't imagine how stressed you must be.

hospitalworry · 18/04/2015 19:56

They tried the highest dose for weight of lorazepan - didn't touch it. Then tried haloperidol not sure if it's working. Is now on steroids and immunoglobulin and seems a bit better
Apparently although the original hospital was awful it seems she was caught nice and early (almost lucky she has diabetes so that fucking up drove us to hospital)
Did a game with her on her sisters ipad something where you touch bugs on the screen to kill them
She did it a bit
Also she enjoyed when her sister took silly warped photos of them both
Any free suitable app ideas?
Very very simple ones?

OP posts:
hospitalworry · 18/04/2015 20:05

Weird - maybe I'm making up haloperidol? just googled it and it says it's not for seizures and can induce them! I may have forgotten the name and drawn something from somewhere else in my mind!

OP posts:
hospitalworry · 18/04/2015 20:25

It's phenytoin

OP posts:
Almostfifty · 18/04/2015 20:27

I hope you get sorted soon.

hospitalworry · 18/04/2015 20:56

Just wondering
It would help me if I set up a thread with stuff about all this and how the journey pans out (may help others in future and will be something to look back on for me and my dd)
What do you all think?
Will anyone be interested in following and commenting?
If so what section of mumsnet would i start it on?

OP posts:
mousmous · 18/04/2015 21:01

maybe you can ask mnhq to move it to general health?

Dognado · 20/04/2015 23:35

Hope your daughter is feeling better OP.

Fizrim · 21/04/2015 10:24

How did I miss this update?! Glad to hear she is in the Walton, it is great and the Professor you mentioned specialises in viruses IIRC. I hope she continues to progress well and is comfortable. And that the stress has reduced for you a bit too, it must be so difficult for you to see her like this. She is in a great place at the Walton Centre.

Justyouwaitandsee · 21/04/2015 11:06

How are things going OP?!

Anjelica27 · 21/04/2015 11:32

Hello.

Two apps I've got which your dd might like are Fireworks arcade and Fruit ninjas.

Thinking of u, take care x

CheeseandPickledOnion · 21/04/2015 13:08

Hope your daughter is improving still. How terribly scary.

musicalendorphins2 · 21/04/2015 14:09

My brother had encephalitis, then a couple of years later, Mollaret's Syndrome. He would get meningitis fairly often for about 10 years, was in the hospital many times, where they gave him antibiotics, Acyclovir and morphine. Usually he went home after a few days. Hope you daughter gets a quick diagnosis and cure. Hang in there.

SirVixofVixHall · 21/04/2015 15:48

Tocca Bocca has a simple hairstyling app that is easy (small children can do it) but strangely satisfying, even if you are an adult!

ThumbWitchesAbroad · 21/04/2015 16:14

Just seen this - how frightening for you all! Shock

I hope she is responding well to the treatment now and starting to function better.

I think you should still go through PALS at the original hospital, but maybe wait until you have the full picture of your DD's condition, so that they can use the information as a teaching exercise for the medics there, so they can learn properly from it.

DS2 plays Smart Baby games (he's 2.6) and one of them is feeding 3 koi carp and watching them grow - I quite like that Blush. It's very simple, only involves tapping the screen to produce food!

ChatEnOeuf · 21/04/2015 17:07

Truly hope she continues to improve, OP.

The crucial thing here is the delay in investigation and diagnosis, and whether this has impacted on her recovery - unfortunately this will be hard to demonstrate, especially if there's not a firm diagnosis. She was not really in DKA on arrival, just borderline. Worth treating as DKA given the state you describe, but the admitting team really should have been thinking outside the diabetes box as well. An acutely confused young adult needs a careful drugs/infection/other stuff work-up and it seems from what you've written that this hasn't happened in a timely fashion. This is where your complaint lies.

Good luck to you both.

hospitalworry · 21/04/2015 20:55

ChatEnoeuf that is helpful
Re where she is now
It's now been a bit over a week
She's just finished a 5 day course of immunoglobulin. Still on steroids. (possible auto immune) She has had another Eeg today still seizure activity but less. Added keppra into the mix on top of the phenytoin. LP results - initial stuff - not herpes still wait to see if chicken pox. Speech therapist daily atm. Receptive capacity improved. Expressive still poor.

OP posts:
cathyandclaire · 22/04/2015 08:21

Thanks so much for keeping us updated. I have had your daughter in my mind, we also have older teens in a tall house and I'm practically banned from the top floor, so it really hit a chord with me.

It sounds like your DD is definitely improving, hoping for more of the same over the next few days. Good to see less fitting and better receptive ability. The Walton seems to be living up to its excellent reputation. Flowers to you at this very stressful time.

musicalendorphins2 · 22/04/2015 08:42

Hi OP. Just checking how you are doing, and glad to see your daughter is improving on some areas now, that is good. Sending good wishes to you both.

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