Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
Justyouwaitandsee · 22/04/2015 11:08

That all sounds positive! As I mentioned earlier in the thread, the virus can take a long time to show in tests (it needs to multiply enough within the spinal cord fluid that they take during the lumbar puncture). I did think that herpes and chicken pox were the same thing though.

Glad the seizure activity is reducing and responsiveness is increasing. Again encephalitis is hugely draining and tiring on the body and the brain, so this all seems to fit with my mums pattern of progress and recovery. Fingers crossed you keep seeing those little extra improvements which give you reassurance and hope! Flowers

hospitalworry · 22/04/2015 21:19

Thanks x
I hope if anyone searches for 'encephalitis' in future they can see this.
BTW bigger improvement tonight too
She is making noise like talking (without words)
Off iv drip too
Apparently she 'failed ' the ot assessment of can she make a cup of tea though. Still somewhat confused

OP posts:
Christinayangstwistedsister · 22/04/2015 21:27

And the other hospital said she was faking it! You did the right thing op x

ThumbWitchesAbroad · 22/04/2015 22:23

So pleased to hear she's improving and I really hope that PALS at the first hospital sit up and take notice of this! Bloody hell, missing viral encephalitis - not clever. Probably not that surprising though? I know when my sister's child had a brain tumour at 21mo, the local hospital missed that too - and the neurologist said it's not surprising, they don't see that sort of thing often enough to recognise it. (I'm still not impressed that she was fobbed off with "oh it's teething/ear infection/tonsilitis though!)

Justyouwaitandsee · 23/04/2015 04:24

Oh that's great news about the speech like noises, am sure again we had something similiar. As I mentioned earlier, I found it quite fascinating to watch the brain repair and recover before our eyes. Definitely sounds like your daughter is fighting back. Keep tracking all these signs!

In terms of sharing your story, once you get further down the line you might want to consider writing up your experience for the Encephalitis society website and perhaps even a national newspaper (although hated by many on here, the daily mail has one of the widest reaches). As I said earlier, I think it is common for enceph to be misdiagnosed in teens and young adults and I think the early distraction of the diabetes history is a particularly powerful one - as it shows how easy it is for even HCPs to overlook key signs due to allowing themselves to focus to closely on one potential cause. To suggest elective mutism before any neuro tests is quite horrendous though! But equally, as you said, at least her diabetes did also give a huge warning flag and hopefully help get her hospital treatment in the first place!

CheeseandPickledOnion · 30/04/2015 20:25

Stay strong OP. It sounds like she is improving which is great news.

TenerifeSea · 30/04/2015 21:33

How is she doing now? Been following your thread.

hospitalworry · 30/04/2015 22:43

Thanks guys
Was worried people would be bored!
It's in a high traffic area
She's had another mri and Eeg today
Should discuss tomorrow
No definitive re what's up with her!
If it's auto immune she's negative to a few they tested for here. Another one they had to send away to Oxford -no results yet.
On anti epilepsy meds. Steroids high dose. Anti clot stuff. Calcium stuff. Normal diabetes meds.
She talks with some 'stock ' phrases but if trying to say something definite it's a massive struggle and doesn't usually come out.
Eg she says I know exactly... Fff
Why not
Yes
Etc
Not necessarily applicable
Eg tea trolley - do you want coffee?
Yes
Leaves it (she hates coffee)

OP posts:
ScorpioMermaid · 30/04/2015 23:31

hi op, I sincerely hope your dd is ok.. Sounds awful for her. For all of you. It reminds me of a similar situation with my uncle. he is tetraplegic (sp?) and the idiots at the local hospital told him it was all in his mind and if he really wanted to walk again he could just basically get up and go. he ended up worse due to lack of treatment for a very serious condition that he has that has come on with his paralysis (don't know the name of it though sorry) needless to say hes suing their butt off!

Musicaltheatremum · 30/04/2015 23:39

God to hear from you. I hope things continue to get better. I was wondering how she was getting on. Hope you're ok too.

Flowerfae · 30/04/2015 23:57

Hi sorry no experiance with an adult having encephalitis but my daughter had it when she was 2. She has recovered, but there are a few changes her personality is slightly different, she is very highly strung, gets upset very easily. When she is coming down with something she gets a squint and she does tire very quickly. It took her just over a year to recover from the effects of the encephalitus (she had permanent squint, wide eyes and facial paralysis down one side and struggled to walk straight).

I'm so glad they moved your daughter to somewhere which understands better Walton I've heard is fantastic. I hope you get some answers as soon as possible xx

Flowerfae · 30/04/2015 23:59

I hate to say this but (if) she was working in the club on friday .. you don't think someone could have spiked her drink with something? I suppose though it would show up on the blood tests if there was something?

hospitalworry · 02/06/2015 22:37

UPDATE
is over a month since i last posted, and 8 and a half weeks since she was first admitted to hospital.
she is better to an extent, looking back on my most recent post 5 weeks ago - not as much as I would have hoped.
had a second course of IVIG (for those in similar boat will know) - an anti body treatment - as that kick started her to talk in the first place.
they definitely reckon its an autoimmune encephalitis but unknown what sort.
apparently its uncommon anyway, and the ones they have a test for (the most common) have all come back negative.
moving to a rehab place soon (when is unknown - presumably when a place becomes available).
was meant to go for a pet scan today but for some reason it was deferred.
there is atrophy in the brain - dont know how much deficit and how much will come back . looking at problems with understanding and also communication - but shes apparently 'good at masking it' (In normal interactions) shes had a Cat test (about cognitive abilities) to help rehab work out what areas she needs help on and the PET scan should help see what areas are affected too.
i know different brain areas can take over function of dead bits - so age to a certain extent may help (?) but its so tiring for us as parents and not knowing .
and keeping positive in front of her
also shes had shit from some of her own 'friends'
ive told her the obvious that if something crap happens to you - well it shows you who your real friends are - and it really has done too.

OP posts:
Butteredparsnips · 02/06/2015 22:59

Just read your thread and I am sorry that you are still having such a worrying time.
Flowers
Real friends and family will still break there for her.
Wishing you all the best, and a continued recovery

Butteredparsnips · 02/06/2015 22:59

Be there... Should read before I post Grin

hospitalworry · 02/06/2015 23:12

thanks Butteredparsnips (your username sounds delicious)
its a shit for sure
i really would like to moan every now and again and vent and i was hoping mumsnet might give me that outlet - so anybody up for a bit of handholding during the moaning - well - ive got shedloads to offload! (it will all come back to you in spades when you go to meet your maker! - its points in the bank!)

OP posts:
meandjulio · 02/06/2015 23:23

I agree with everything Just says.

straight talker I'm interested in your post - I'm an SLT - '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' - doesn't necessarily sound particularly odd to me, especially if 'ew ew ew' were a phrase she used often previously, it just suggests that receptive language skills are affected as well as expressive ones. Would this not count as a potential sign of a focal neurological problem? Would you not at least want more of a language screen done?

I may say that if I'd expected that ds was going to a sleepover I wouldn't check his room or expect a call to say he'd arrived and he is a lot younger than your dd. Thank God she was at home - if this had happened at uni, heaven knows when she would have been found.

Musicaltheatremum · 02/06/2015 23:24

Thank you for the update. This is very hard for you. Take care..

CurbsideProphet · 02/06/2015 23:37

Oh OP I remember reading your first post and thinking how horrendous. You sound like you are doing a remarkable job of keeping it together for your DD.

I don't know if this helps but I have my own experience of "brain issues" at 18: seizure activity, not diagnosed by local hospital, finally diagosed with epilepsy at Walton Centre. It is such a fantastic hospital.

It must be so difficult for you to see your DD in hospital. Much strength to you and your family Flowers

CurbsideProphet · 02/06/2015 23:38

Btw there are always people on mumsnet who will hand hold at all hours of day and night Smile

hospitalworry · 02/06/2015 23:58

I'm literally tear-ing up
Thanks everyone

OP posts:
MiloCat · 03/06/2015 20:43

I keep checking for updates on your dd.

So sorry that progress is slow, it must be such a worrying time Flowers.

Rant away. I know we can't help but we can listen xxx

hospitalworry · 03/06/2015 21:13

We can take her off the ward
She's still on a dols though
Apparently the pet scan IS not a brain one but abdominal to double check no tumour coz ovarian tumour is a common cause. They didn't see one on the abdo ct but will double check

OP posts:
Musicaltheatremum · 04/06/2015 16:54

Good to hear from you. But sorry things are slow. It must be really tough for you. Shame her friends are giving grief though. Neither of you need this. Take care and look after yourself.

Butteredparsnips · 08/06/2015 13:58

Hope the trip of the ward went well for you. How are you today. I am always up for being ranted at btw [Grin]