UTIs, seizures and hospital

jugglingmum

Registered User
Jan 5, 2014
5,499
Chester
I'm really sorry to hear this, and frankly it amounts to both medical negligence and arrogance.

If a specialist is involved why on earth wouldn't you respect their opinion when you aren't a specialist.

Sending ((((((((hugs))))))))))))))
 

canary

Registered User
Feb 25, 2014
11,300
South coast
Why on earth would they do that :eek::eek:?
Its because he has a condition call nocturnal polyurea (diagnosed by the neuro-urologist at the National Neurological hospital), which is where all the urine is produced overnight and hardly any during the day due to problem with the autonomic nervous system. They were very concerned about the lack of daytime urine produced combined with the UTI and thought that the lack of urine was due to the tegratol. I explained that it wasnt a side-effect of this drug and asked that they contacted the National Neurological hospital before making any decisions about his anti-epileptics. I know that this was done and they decided to leave the medication, but obviously someone went ahead anyway.
 

Louise7

Registered User
Mar 25, 2016
1,605
How awful, although I can't say that I'm surprised. We had the opposite when Mum was in hospital - they put her on high doses of anti-epileptics without her having an epilepsy diagnosis. The hospital notes indicate that this was a 'mistake' :eek: During a subsequent hospital admission she was given potentially fatal doses & mixtures of pain relief. We complained but they just stated that their investigation was unable to establish why these 'mistakes' had occurred, and there was no suggestion that they had taken any steps to make sure the errors didn't happen again in future. I'm concerned that patients might die due to their lax approach to medication but no one is listening :( I hope once his medication is back to normal your husband recovers well.
 

canary

Registered User
Feb 25, 2014
11,300
South coast
I dont know what happens now. OH has been on this lower dose for several weeks now, so I suspect that it will have to be reintroduced gradually. Plus, of course, the information about this reduced dosage will have been given to the GP on OHs discharge from hospital, so I wont be able to obtain the medication for a higher dosage.
Im hoping that the National Neurological Hospital gets back to me soon.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,497
I dont know what happens now. OH has been on this lower dose for several weeks now, so I suspect that it will have to be reintroduced gradually. Plus, of course, the information about this reduced dosage will have been given to the GP on OHs discharge from hospital, so I wont be able to obtain the medication for a higher dosage.
Im hoping that the National Neurological Hospital gets back to me soon.
O my lovely my heart aches for you; it’s all too much sometimes. & this is one of those times!

I really hope that you hear from someone soon but I would also be contacting the CQC when you have enough energy!
Medical negligence - mistakes with drugs! horrific experience

Please let your family know what you are going through
X
Sending love & hugs
(((((((((((((((((Big hugs))))))))))))))))))
 

minet48

Registered User
May 23, 2014
46
I dont know what happens now. OH has been on this lower dose for several weeks now, so I suspect that it will have to be reintroduced gradually. Plus, of course, the information about this reduced dosage will have been given to the GP on OHs discharge from hospital, so I wont be able to obtain the medication for a higher dosage.
Im hoping that the National Neurological Hospital gets back to me soon.
Dear Canary, I've only just picked up this thread. "It never rains but it pours" is a completely inadequate response to what you are & have been going though. So much worse than that and I can only describe what you're doing for your OH as heroic. Sending you positive thoughts & every best wish possible - especially for the help & support you & your OH deserve from the professionals and the wider family..xxxx
 

Palerider

Registered User
Aug 9, 2015
1,277
North West
Welll the saga continues.

I, not sure if I mentioned at the beginning, but OH was epilepsy as a result of the car accident he had 25 years ago and takes anticonvulsants. The seizures that he had that brought him into hospital and the ones that he continued to have while he was on the ward were very unusual, though.
Yesterday, I visited OH and was catting to him in hia room when he had a small seizure infront of me, When he came round he said "oh" I feel all faint and dizzy". I explained that he had had a seizure and he nodded and said "Ive been getting a lot of that since I came back from hospital" He has been getting very confused recently, so I didnt think a great deal about it, but then he said that they had cut down on his anticonvulsants! I couldnt see that the care home would do this, but thought Id better check.

I spoke to the manager and she looked up on his drugs chart to see what he was supposed to be having and I then discovered that OH was right! He had got the details wrong, but his anticonvulsants had indeed been reduced - at some stage while he was in hospital someone had decided to reduce his anticonvulsants (against the advice from the National Neurological Hospital) so that his tegratol was cut down from14,000 mgs a day to 200 mgs a day, all at once. :eek::eek::eek:

To say I am shocked is an understatement. Anticonvulsants should never be reduced suddenly and to reduce by such a large amount is appalling. Suddenly things began to make sense - the continued seizures in the hospital (particularly the bout of massive seizures about 5 days after he was admitted), his regular complaint that he had a headache, his fluctuating presentation and the way he is sleeping more says to me that he is having multiple minor seizures throughout each day. Even when the care home phoned me up to say they thought he was getting a UTI as he was suddenly much, much more confused and very wobbly on his feet it could equally have been due to him having a major seizure - if it happened while he was in his room then nobody would have seen it, and I suspect that the minor seizures are going unnoticed because they are so small that unless you knew what to look for you wouldnt see them.

I have left an urgent message on the National Neurological Hospitals epilepsy clinics answer phone asking for advice and Im hoping that they will contact me again soon.

@millalm - thats terrible. Words fail me.
Nothing has been said to me about SILs party
Not good at all

I suspect whoever prescribed the tegretol, didn't follow your OH's normal prescription as advised by the National and no one thought to question why he was on such a large dose. Hopefully they will get in touch with you soon and sort this out. Another problem your OH didn't need.
 

millalm

Registered User
Oct 9, 2019
61
@canary I am so sorry to hear of your latest trials and tribulations, I know nothing of this condition but can identify with the frustration of improperly prescribed and improperly dosed medications! I have been thinking about you all day and I have some thoughts about what happened on Sunday. Your SIL has been insensitive to your feelings but has also committed a bigger sin in my books by putting your children in a position to lie to you, or as we call it in our family, a lie by omission, WHICH IS STILL A LIE. For me that would be unforgivable. I wouldn't waste time on your SIL but I do think you need to get it out in the open with your kids. I would just casually say when you see them 'So then.... how was the party?'. They will know you have been hurt without you making a huge issue out of it and perhaps will feel the need to explain how it came about, or not. Either way, it will be out in the open and off your chest so you can get on with Christmas celebrations. We have enough to deal with on the dementia train without getting derailed by the thoughtlessness of others.
 

millalm

Registered User
Oct 9, 2019
61
Ive tried getting it out in the open @millalm , but they have just ignored it.
The party is this Sunday, BTW, so it hasnt happened yet.
I'm sorry , I misunderstood your msg when you said there hadn't been a word said about it. I thought it was last Sunday duh.
 

canary

Registered User
Feb 25, 2014
11,300
South coast
I'm sorry , I misunderstood your msg when you said there hadn't been a word said about it. I thought it was last Sunday duh.
Dont worry. I have given them the chance to tell me that they will be going, but no-one has said anything to me. If they are genuinely not going I would have expected them to correct me, but no.

On the plus side, Ive got a couple of kylie sheets for when OH is back over Christmas, just in case.
 

Jale

Registered User
Jul 9, 2018
385
OMG - that is awful, I hope you can get an explanation as to why this has happened
 

canary

Registered User
Feb 25, 2014
11,300
South coast
Right, Ive had a catheter tutorial from the carers at OHs respite home and they use bags which seem to fit together more firmly than the ones he got from the hospital, so I am hoping that it will all stick together now.

Oh is coming home Monday, so fingers crossed for then.
The children will be gone by the time he arrives.
 

Sirena

Registered User
Feb 27, 2018
2,042
I hope the tutorial and different bags means it will be a bit easier for you @canary. 'Easy' being a relative term of course, and not really at all appropriate.

I've read what you said about the party and your children and I honestly don't know what to say. I have no idea why they would apparently collude in excluding you, but I hope the reason they have not replied is because they want to talk to you face to face at the weekend, rather than because they are trying to ignore the issue. I hope you do manage to have a good time with them but I can see why that might be difficult. I don't have any close relatives to disagree with or misunderstand, and when I read about this sort of situation I'm glad I don't. I hope you know you will always get support on here.
 

notsogooddtr

Registered User
Jul 2, 2011
905
'Children' can break your heart. I hope there is an explanation for their behaviour, hard to know what it could be though.Good news about your OH, fingers crossed re catheter.
 

Dimpsy

Registered User
Sep 2, 2019
1,019
Hello @canary, it's bad/sad enough that you have the worry of your husband's decline which hopefully will be on the up soon, without all the upset of the family party.

Is your SiL your OH sister? If she is, it is a slap in the face for her sibling and shows a complete lack of sympathy to leave you out in the cold, when you are the very person who should be cuddled up by everyone (I would give you a big cuddle to take the hurt away, in fact, we can all send cuddles).

You know your children; do you think they will enjoy the party, knowing that you know they are there and you have been excluded? I'm sure that deep down they will feel mean.

I might have got the wrong end of the stick, I thought your OH was in respite until mid January, or is he coming home for Christmas and then going back for a couple of weeks. The reason I mentioned it is because to me you could do with a break.

A change is as good as a rest, so they say. Would you be able to get away for a few days? Being away from home and all the "stuff" that is crowding in on you and putting you in the doldrums may clear your head, put things into perspective and help with any decision making. Things can easily be blown out of all proportion and different surroundings might do you a power of good.
You always show such compassion replying and helping TP members, it's upsetting to many of us to see you so low.
I'm sorry if I'm speaking out of turn.
 

Splashing About

Registered User
Oct 20, 2019
373
“You always show such compassion replying and helping TP members, it's upsetting to many of us to see you so low.”

This
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,351
Kent
I cannot see how it can possibly be "made right". I was obviously never intended to know that my children and their families had been invited, but I wasnt.
I agree it can`t be made right @canary but you could have the last word by telling your children , when they leave, you hope they enjoy the party.

There is only one thing worse than not being invited to a party and that is a late, reluctant invite once everyone realises that you know
I agree and am really sorry you have been placed in this position.
 

canary

Registered User
Feb 25, 2014
11,300
South coast
Hooray! I have had contact from the epilepsy clinic at the National Neurological Hospital about OHs reduction in medication and subsequent increased seizures. She listened to the whole story and seemed to understand exactly what I was talking about. She took the name of the local hospital, the name of the consultant that he was under at that hospital and OHs hospital number so that she could make investigations and said that it sounded like OH needed an increase in medication again. She is going to phone me back once she has contacted the local hospital.