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Sister in PICU - please reassure me...

(41 Posts)
ZipIt Wed 28-Aug-13 10:51:13

My lovely little sister (age 22) is having a severe psychotic episode, seemingly out of nowhere. I'm currently looking after her 1-year-old DS (who is delightful, and seems happy to be here with his cousins, although obviously he must miss his mum). She was sectioned 4 weeks ago and there's still no improvement. Is this an unusually long time to be psychotic? Will she get better? I hate that she's suffering this, I feel so worried for her DS, and, on a selfish note, I miss her so much.

ZipIt Tue 03-Sep-13 10:21:44

Frat (if you're still about) - do you mind my asking whether your relative has retained some of the ideas they had when psychotic? Is it a case of living with the ideas, or the ideas going? Hope you don't mind such specific questions (obviously please don't answer if you'd rather not).

mignonette Tue 03-Sep-13 16:58:12

Good to hear that Zip.

mycatunderstandsme Tue 03-Sep-13 21:41:26

Hi Zipit. I posted on here recently about my 17 year old daughter.
She spent 6 months in hospital this year with a severe psychotic episode. She deteriorated so much in hospital I did not believe there was any hope of her ever living in society again. Basically I thought she'd be permanently hospitalised.
I feel she was left on an ineffective medication for far too long but once her meds were changed and she started a new drug the change in her was dramatic.
She was discharged end of July and she is virtually back to how she was before just maybe slightly less confident. She is going back to school tomorrow to restart her a levels.
So really there is still a lot of hope. I hope you are OK. I have found it very hard and still feel traumatised by it all.

mycatunderstandsme Tue 03-Sep-13 21:52:27

Also Zipit you asked whether somebody retains the odd ideas. My DD is now able to talk about her beliefs and knows absolutely that they were not true she can even joke about it. When she was ill I did not believe she'd ever give them up.
She was also very zombie like and overmedicated for a while but the doses have been gradually reduced as she recovers and as I said she's almost back to how she was before.
I do hope this helps. Xx

ZipIt Tue 03-Sep-13 22:12:47

mycatunderstandsme, I'm so sorry to hear that your daughter and you have had such a difficult year (understatement). It's fantastic to hear that she's better, and going back to school. That must be such an achievement for you both. I'm not surprised you still feel traumatised by it, especially after it seeming to you at one stage like she might not get better.

Thank you so much for posting. It's so fantastic to hear such a positive story.

Do you mind my asking what meds your DD was (is?) taking? My DSis is on an old-style antipsychotic (and lots of sedatives, etc.) after some of the more modern ones didn't seem to be working.

Thank you again for posting, and massive well done (is this the right phrase?) for getting through the last few months thanks

mycatunderstandsme Tue 03-Sep-13 22:33:00

My DD started on quetiapine( a newer atypical AP) and was on it for 3 months and it didn't work.. They tried adding lithium after 2 months but it was only a low dose of lithium and she seemed to switch into depression after that was added. Her delusions changed at that time and she seemed to get worse. She was started on haloperidol as a temporary measure as she was so agitated and that worked for her.
They didn't want her to stay on haloperidol so she started olanzapine(an atypical AP) and it worked really well. she is still on lithium also. The effect of the olanzapine was obvious from the first day and she was
free of the delusions after 2 weeks or so.
There was some confusion over my DDs diagnosis which was originally thought to be schizoaffective but the final diagnosis given was bipolar with psychosis.
She has experienced most of the side effects that olanzapine can give you but it really works!
We are trying to manage her weight by calorie counting and it does work but requires will power! Fortunately she was slim to start with but has gained over a stone.
It sounds like they are trying lots of things to get your sister well soon which is good.

ZipIt Thu 05-Sep-13 19:56:21

Thank you again mycat. It's really helpful to hear about the range of old and new antipsychotics/mood stabiliser others have tried (especially when it's led ultimately to a good outcome like your DD's!). Hope things are going well so far with the return to school?

Things appear to be changing for DSis a bit now. I think they've been able to reduce the sedation slightly, and the more lucid moments seem to be more frequent. I know it's a long road ahead, but I'm feeling more hopeful.
Thank you all again for listening to me and for being so very kind and helpful.

mycatunderstandsme Fri 06-Sep-13 10:33:36

Glad to hear things are going in the right direction Zipit. My DD is really enjoying being back at school and going to a party tonight but only time will tell whether she can function as well as before.

She had her dose of Olanzapine reduced again last week and her personality is now there all the time whereas it was only there as the drug was wearing off before.

I know with DD that until she started the Olanzapine she had some lucid moments but very rarely and they were never sustained so I'd get my hopes up only for them to come crashing down again the next time I saw her.

Your sis is lucky to have you to support her. The chance of her recovering from this episode is really very high if you look at the statistics but it is hard to believe it when they are so ill.

ZipIt Tue 24-Sep-13 16:22:20

Hi mignonette, Frat and mycats (if you're still around). Just wanted to thank you again for your messages - they were so helpful to me.
DSis is still unwell and under section but is at least now on an open ward, so there's progress in many ways.

mycats how are things? Hope your DD is still enjoying being back at school. I know it's a while ago now but how did the party go?

mycatunderstandsme Tue 24-Sep-13 17:44:56

Hi Zipit,
I was wondering how your sis was. Glad things seem to be moving in the right direction-these things do seem to take a long time to recover from.

My DD is pretty much back to her old self now apart from being very tired. She is back to her old hobbies, talking about her hopes for the future and has been to a party every weekend since she went back to school!

Fingers crossed she stays this way.

I really hope your Dsis has a full recovery too.

ZipIt Fri 27-Sep-13 11:16:30

Hi Mycat. Thanks for the reply. Sorry to take a while to get back to you - sometimes only get to use MN when at work (don't tell my boss....).

That's such wonderful news about your DD - I'm so happy for you both that things are going so well. The tiredness sounds very understandable (and almost inevitable for a while?). Must be fab to see her getting back into all her old hobbies, etc., and as for going to parties - to me that sounds like it speaks volumes about how well she's doing.

Does she get some ongoing psychological support?

mycatunderstandsme Fri 27-Sep-13 20:39:27

Hi again Zipit. My DD is with the early intervention in psychosis team who see her weekly but don't really offer psychological support. They are checking she doesn't have any symptoms I think which I guess would be more important if you lived alone.

Because her diagnosis is bipolar the psychiatrists think it just needs treating medically. I actually feel she would benefit from seeing a psychologist as she does have other issues in the background(we adopted her at age 7) We have asked my DD if she would like to see somebody privately but she is quite resistant and wants to move on with her life so we have left it for now.
The tiredness is a major issue and is probably a side effect of her meds. Not sure how it will go when the work piles up at school but will have to see how it goes.
Please keep me updated on your sis. Thinking of you. It is so hard.

ZipIt Thu 03-Oct-13 11:05:38

Hi again MyCat. Hope things are going well with your DD this week.
I had assumed that early intervention would provide psychological as well as medical input, so it's interesting to hear that that's not necessarily the case. Having now done a bit of reading around it in relation to my sister, I think most of these EI teams are supposed to provide specialist psychological therapies as well as medical management, so it might be worth pushing for if you think it would be useful. I don't know the details, though, so I might be talking nonsense (in which case I apologise!).

They're saying that it still seems likely that it'll be a long time before DSis will be able to leave hospital. She's starting to seem pretty institutionalised now. I know it's still relatively early days, but it seems to be taking forever. One foot in front of the other...

mycatunderstandsme Sat 05-Oct-13 21:08:55

Hi Zipit. I think they do become very institutionalised in hospital. My DD was allowed home leave whenever she wanted really as she was there voluntarily but she refused to come home as some of her delusions were about the house and that was so hard for us. She said she was never coming back and alternative accommodation had been discussed.
As soon as she started getting better she changed her mind and wanted to be back at home and in fact couldn't wait to be discharged. They really took their time discharging her to make sure she could cope. She came home 5 days a week and spent the other 2 days in hospital for at least 6 weeks before she came home for good. I guess that must be normal for mental health wards but I was quite surprised they kept the bed for her when she was at home!
Still thinking of you.

ZipIt Mon 21-Oct-13 12:20:21

Hello mycat.
Sorry again for the long delay. I hope things are going well? Is it half term this week where you are?

It's been full-on hectic here. DSis was discharged last week and is staying with another relative of ours, where it's very quiet and with predictable routines. She's seeing her DS again for short periods which has been very hard for them both. She is still very visibly unwell, but things do appear to be settling. It's very hard not knowing how full a recovery she'll make (no one will make any predictions). I think she's pleased to be out of hospital, but it's hard to tell.

Anyway, hope all's still going well with you and your DD. How is the tiredness now?

mycatunderstandsme Sat 26-Oct-13 21:22:28

Hi Zipit,
Glad to hear your sis is out of hospital. It sounds like things are different with adults as my DD was not fully herself but not unwell when she was discharged ie she was not showing any symptoms of illness. It did take a good while for her to get back to normal which is very frustrating but it may well happen for your sis. Thinking about it it must have been at least 8-9 months from her admission to hospital and everyone was amazed at the speed of my DD's recovery once the medication actually worked! DD is less drowsy now but still sleeps more than usual-she always did sleep a lot though and I think it almost seems to be a reaction to stress.
Things are still Ok here but my DD has the usual teenage ups and downs and it's hard not to think she's getting ill again especially as we think this is the time of year it all started.
It is great that you are there for your sis. We do not have any family support as we live a long way away from all our relatives and they are not particularly willing to help. We have not had a break from DD and feel we can't leave her on her own overnight yet even though the professionals have said they think she'd be fine.
Best wishes to you,
Mycat x

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