DD still in psych hospital!!

[SuzyQ]

Hi All,

 

WEll just over 4 months on my DD who has now turned 15 is still in a Psychiatric hospital, she has been drugged to the eye balls and turned into an over weight Zombie, since January she has put on just under 2 and half stone!! she has had a perio since being in there but fairly sure she isn't pregnant even though they haven't checked!!!

her Psychiatrist left without any formal notification to me and she has a new one that she had informed me of!! back in January she was deemed not to be Gillick competant and was there informally under parental responsibility but I am never informed of drug changes unless she tells me!!

She has ASD and has visual and auditory hallucinations, and is volatile and agresive she has attacked a number of staff and patients, and has tried to harm herself also in response to the voices!!

We are trying to find her a 52 week residential school/placement and as normal social services have been there normal obstructive selves, but it looks like we might finally be getting somewhere.

A few of you will have heard all this before, just want some support as I feel all alone and I am having a nightmare ride on this rollercoaster guilt that I cannot care for her myself and I have let her down, guilt I have let them do this to her, then realisation I cannot care for her and keep her or myself safe, I am up and down like a yo yo!!

Also who has children on REsperdal?? What kind of dose is acceptable, she was on 2.5mg x 2 a day along with Topiramate 100mg x2 a day and two weeks agao was also on zopi...something...a sleeping drug 7.5mg and on top of all of that lorazipam when needed up to about 4mg a day!! then there were the drugs to counter act the dribbling side effect!! and a few weeks prior to that Orlanzapine also on top of everything else!!

I just feel they are drugging her without finding our if there are any causes other than the AS for the psychosis, they won't carry out an MRI unless I do it as part of a research unit at Oxford! she is vacant alot and often one minute is there and the next she stares and is gone until 'she comes back in the room' it's hard to see as she was a vibrant 14 year old footballer who had AS and had huge trouble socially and comunicating so yes had her problems but she has become very ill and it seems no one is trying to find out what's wrong.

I aso need to find a placement for her, VErona house has been mentioned and a rudolp steiner school in gloucester, I have found a nice one in the Camdian group but apparently they have told the LEA they don't have any placements in my DD's year group......

 

........H E L P .........

[Karen A]

<'> <'> <'> <'> Hi Suzy.I feel very sad and frustrated for you.It does feel like so long and things appear to be no further forward.

Please don't feel guilty for not being able to have your daughter at home.Psychosis is a very complex condition in teenagers even on its own in a teenager with AS it is even more complicated.

I do not know if you have used the young minds helpline at all.I found them very supportive.If the person on the line cannot offer advice that is specialist enough they can arrange for somone with knowledge in the area you need to call back.It might be worth talking through the medication issues and the difficulties you are having with obtaining adequate information/ communication with them.

PALS may also be able to offer some support.However I think from before that your daughter may be placed out of county and am not sure if a hospital bed in a private hospital has been funded If the placement is in a private hospital you could still try your local PALS for advice but it makes the situation complicated.

I did want you to know I am think about you in a very difficult situation anyway. <'> Karen.

[Karen A]

http://www.youngminds.org.uk/parents/more-...rmation-service

This page has the young minds number on.Karen.

[Enid]

You poor poor thing. What a nightmare, my DS was also placed in emergency care in January last year, with very simialar behaviour, he was only there for a month but over the following 8/9 months normal life was impossible. He was on 3 mgs of resperidone a day, but I was able to up this is needed, I often did. The weight gain was terrible he went from being thin to a bloated fat boy, I had to weigh this up with the fact that this was the only way I could parent him, he gradually got "better" I was offered no help at all after that I st month as he was only 12 and he needed to be 14 to be placed anywhere. He is on 2 mgs a day now, and still overweight, but not as much, he has a "beer gut!" but it is gradually reducing, as his behaviour is so much better he can monitor his food intake, whereas before that was the least of my worries. He was also placed on stratta, 65mgs a day in August last year, and taken off Equasym, this seems to have had a calming effect. There are many good schools around and I think that is your best way forward, she needs to be out of there asap, but getting people to pay for it is a nightmare. I too felt soo guilty last year as I looked for 52 week placements, so know how you feel. Things have turned around for us, I thought there was no way back. No answeres but sending you loads of love and support. keep strong <'> Enid

[cmuir]

http://www.youngminds.org.uk/parents/more-...rmation-service

This page has the young minds number on.Karen.

 

 

Hi

 

I've had cause to contact Young Minds and they are fantastic. They'll even arrange up to a 50 minute telephone call from a specialist Psychologist/Psychiatrist. Well worth phoning.

 

Best wishes

 

Caroline

[Karen A]

Hi

 

I've had cause to contact Young Minds and they are fantastic. They'll even arrange up to a 50 minute telephone call from a specialist Psychologist/Psychiatrist. Well worth phoning.

 

Best wishes

 

Caroline

 

Thanks Caroline.I did not need specialist support so it is great to have confirmation that the service is helpful.

 

[lisac]

you poor thing, i know how dreadful it is . is there any chance you could get her home and monitor the drugs she has, you will then be able to vary it, to get the right levels so she can function without the zombie state? Risperdal on its own, eventually, works for us, though if my son was in psychiatric care , i am convinced this wouldnt be the case, .

[lisac]

just to add, i know what you are saying about noone trying to find out what is wrong, i begged for ages, for my son to have a full body MOt if you like as he was clearly upset, but everyone put it down to his asd, and was told he had a psychotoc /hllucinating episode. We then found out , too late, he was going blind in one eye, and this was the cause, seeing floaters/darkness, how ###### scary for him, all the experts had to eat their words, it is diabolical, and should have really sued, sorry to go on, and so hope you get to the bottom of it , x

[bikemad]

Woah...really dont know what to suggest but had to give you some of these.... <'> <'>

[connieruff]

Hi,

I don't know anything about this but... have you asked the doctors in charge:

why is she taking these drugs?

what they hope to achieve by her taking them?

will it help long term?

how long she will be taking them for, exactly?

what the side effects are?

and how will they measure sucess?

what is sucess exactly, which brings us around to the question again - why is she taking these drugs???? What prompted her to go in there?

I would go with your gut reaction, what do you feel is right for HER - is she suffering - is she getting better??? Is she happy? The brain is mostly unchartered territory, they will be hoping for the best but they don't really know.

 

My gut reaction on reading your thread? - get her out of there. But as I said I'm no expert. Good luck

Cxx

[isme]

OMG, I have no idea of your "story" as such, but your post has made me really upset! Its awful that you are not being kept informed of things, its just not right!

Hugest hugest hugs xxx

[SuzyQ]

Hi Guy's

 

Thanks for letting me know I am not on the ride on my own.

 

Had news from the hospital late last night (9pm) I hadn't heard from DD and she calls religiously at 1.30 and 6pm..this has developed over the last two weeks!! so we eventually called the hospital.

She tried to take a member of staff hostage, the woindow she broke the previous day was an unbreakable window...!!! They told my husband they do not know how she managed it!! She is currently not allowed out of her bedroom and i on a ratio o two staff to one of her...she is very much as she was in November by the sounds of it, maybe a little worse but definately no better after four months in thereon high meds, of course they took alot of the meds away andnow they don't have the zombie...they have jekyl and hyde and a very volatile agressive one. I am going to look into some points raised by you guys later along with a few other things.... I am not happy that the only reason we know is because we called the hospital. they haven't fixed her r even stabilized her I still think the voices are bad and even the hallucintaion..which is a very specific one, last weekend she told me she had had two violent nightmares and a thir on the sunday night all involving strangling and stabbing staff memebers and other people... she has been brave and told some oneand they have dismissed it as normal to her!! she must be going through hell and I cannot help her, i feel awful and have spent most of yesterday evening crying.

I just thought would share today's undate briefly, and will give more detail later after I have been to work !

 

Thanks everyone for you support It really is a great help

[Karen A]

Hi Guy's

 

Thanks for letting me know I am not on the ride on my own.

 

Had news from the hospital late last night (9pm) I hadn't heard from DD and she calls religiously at 1.30 and 6pm..this has developed over the last two weeks!! so we eventually called the hospital.

She tried to take a member of staff hostage, the woindow she broke the previous day was an unbreakable window...!!! They told my husband they do not know how she managed it!! She is currently not allowed out of her bedroom and i on a ratio o two staff to one of her...she is very much as she was in November by the sounds of it, maybe a little worse but definately no better after four months in thereon high meds, of course they took alot of the meds away andnow they don't have the zombie...they have jekyl and hyde and a very volatile agressive one. I am going to look into some points raised by you guys later along with a few other things.... I am not happy that the only reason we know is because we called the hospital. they haven't fixed her r even stabilized her I still think the voices are bad and even the hallucintaion..which is a very specific one, last weekend she told me she had had two violent nightmares and a thir on the sunday night all involving strangling and stabbing staff memebers and other people... she has been brave and told some oneand they have dismissed it as normal to her!! she must be going through hell and I cannot help her, i feel awful and have spent most of yesterday evening crying.

I just thought would share today's undate briefly, and will give more detail later after I have been to work !

 

Thanks everyone for you support It really is a great help

 

<'> <'> <'> Suzy.I cannot imagine the stress you are all under.I wish I had more ideas as to what you can do.Your daughter is not sectioned under the mental health act is she ? I was just thinking from my very limited experience that at least with a section carers have more rights regarding information and appeal if they do not agree with the care being provided. ? Karen.

 

[Enid]

Suzy. My heart goes out to you and yours. Hang on in there. <'> <'> <'> <'> Enid

[Karen A]

Hi again.I have done a bit of reseasrch for you.My OH works for a mental health foundation trust.I have been on the trust web site to see who they recommend people contact for advice and information.

http://www.rethink.org/how_we_can_help/adv...tion/index.html

This is a link for an other mental health charity.The charity provides support for people effected by serious mental illness and their carers.They have a phone advice service.The number is on the page.Karen.

[lisac]

suzyq, you are incredibly brave as i know what a massive worry this is. thank god you have work as it can take your mind off it for a while. Maybe once they get the right medication and the right dose, things will improve, sometimes it can be trial and error for a bit. stay strong, x

[szxmum]

((((Hugs)))) SuzyQ

 

I just wanted to say that I'm thinking of you and I hope that some of the leads on this thread give you some badly needed practical support.

 

xxx

[Salbaggio]

I also am not sure of what practical use I can be but I wanted to let you know that I follow this thread and send you my love xxx

[SuzyQ]

<'> <'> <'> Suzy.I cannot imagine the stress you are all under.I wish I had more ideas as to what you can do.Your daughter is not sectioned under the mental health act is she ? I was just thinking from my very limited experience that at least with a section carers have more rights regarding information and appeal if they do not agree with the care being provided. ? Karen.

 

 

Karen, thanks for advice, no she is not under a section, they were going to back in January but her Dr seemed reluctant.

She was however deemed not to be Gillick competant , meaning that she doesn't have sufficient understanding to be responsible for a say in her care and that she is there under 'parental responsibility' but in that case I am sure as an informal patient there under my responsibility they should be discussing her medications and care with me!! One would assume...but maybe I am wrong.

 

we have now been informed that she is going to have a visit by the police due to the broken window, but again I feel perhaps I should be invited to that also!!

It is laughable...but not at all funny that not long ago she was abused by another patient...male!! and apparently even though she told us she was going to speak to the police about it I recieved a letter saying that she didn't want to take it further!!!

 

Do these places have a duty of care?? because I am starting to wonder!!

We were told yesterday that some one would call us back and let us know if they thought it a good idea we go and visit her tonight, she has asked to see her sister, we dont usually visit during the week as it is about a 130 mile round trip!! But if it will help her of when she is really distressed we do. We are still awaiting the call!!

[clair]

Karen, thanks for advice, no she is not under a section, they were going to back in January but her Dr seemed reluctant.

She was however deemed not to be Gillick competant , meaning that she doesn't have sufficient understanding to be responsible for a say in her care and that she is there under 'parental responsibility' but in that case I am sure as an informal patient there under my responsibility they should be discussing her medications and care with me!! One would assume...but maybe I am wrong.

 

we have now been informed that she is going to have a visit by the police due to the broken window, but again I feel perhaps I should be invited to that also!!

It is laughable...but not at all funny that not long ago she was abused by another patient...male!! and apparently even though she told us she was going to speak to the police about it I recieved a letter saying that she didn't want to take it further!!!

 

Do these places have a duty of care?? because I am starting to wonder!!

We were told yesterday that some one would call us back and let us know if they thought it a good idea we go and visit her tonight, she has asked to see her sister, we dont usually visit during the week as it is about a 130 mile round trip!! But if it will help her of when she is really distressed we do. We are still awaiting the call!!

 

All psychiatric wards and hospitals have a duty of care and if you are not happy you should really put in a complaint. I am a student nurse and i know that all formal complaints are taken very seriously and changes are made. You may feel awquard about complaining but the staff really will make sure that your daughter is looked after properly as it is their jobs on the line. Can i just ask why the police are being involved if your daughter is not gillick competant. If she is not capable of making decisions for herself then she should not really be responsible to talk to the police without her next of kin there, surely. All medication and changes in her health should be reported to you as her parent / next of kin, the only time that this would change would be if Social Services took you to court to get parental rights. Even if someone was under section by the way, they would still have to inform you of what was happening. If you tell the staff specifically that you want to be informed every time there is a change this can be written in notes so that someone can ring you and let you know what decisions were made and why. Hope this helps.....don't feel intimidated you and your daughter have rights and they should have provided you with a leaflet explaining what rights you and your daughter have when in hospital.

 

[SuzyQ]

***UPDATE****

 

Hi All,

Just an update...not alot has changed.

Social Services have seen us and my mum. I have no feed back, the funding for DD has been pulled as not enough proress is being made!!! We are awaiting a 52 week placement still and now it looks as though no school will accept her or have place, so she may end up in foster care or a care home, which i really dont want and not sure I will cope with that.It is one thing her being in a residential school it is another thing having her in foster care its all a nightmare and I know it all comes down to funding and what the cheapest option is...any ideas on schools that are residential ????

Getting to the stage of saying sod it i will have her home give up my job and care for her even though I know it would end with one of us seriously injured or dead!

REally had enough now

[Karen A]

***UPDATE****

 

Hi All,

Just an update...not alot has changed.

Social Services have seen us and my mum. I have no feed back, the funding for DD has been pulled as not enough proress is being made!!! We are awaiting a 52 week placement still and now it looks as though no school will accept her or have place, so she may end up in foster care or a care home, which i really dont want and not sure I will cope with that.It is one thing her being in a residential school it is another thing having her in foster care its all a nightmare and I know it all comes down to funding and what the cheapest option is...any ideas on schools that are residential ????

Getting to the stage of saying sod it i will have her home give up my job and care for her even though I know it would end with one of us seriously injured or dead!

REally had enough now

 

<'> <'> <'>

I wish I could suggest something useful but I can't.I did want you to know that I am thinking of you.Karen.

 

[SuzyQ]

thanks Karen, so far the only place that seems to be in the running is grately huse, but I am sure it is only 38 weeks and we are after 52 weeks!!! it's ridiculous that there isn't anywhere for her.

she cannot be the only 15 year old girl with the complex problem of AS and psychosis which means she has behavioural issues too....there must be somewhere that could cope with her!!!

[Enid]

Hi, google "young foundations" I still have it saved to favourites from when my DS was going through a similar time, when his behaviour was more controllable, I was looking into cruckton hall in shropshire, but again, like you money was a problem, young foundations have many centres and take children with complex needs and challanging behaviour, I know what you mean about foster care, its one thing them being in a school/centre but to be in foster care, you feel like you have lost them. Enid

[Enid]

Also cambian education, they are 38 wks, but post 16 they are 52 wks and are for children similar to your daughter, may be something for the future? Enid

[Karen A]

***UPDATE****

 

Hi All,

Just an update...not alot has changed.

Social Services have seen us and my mum. I have no feed back, the funding for DD has been pulled as not enough proress is being made!!! We are awaiting a 52 week placement still and now it looks as though no school will accept her or have place, so she may end up in foster care or a care home, which i really dont want and not sure I will cope with that.It is one thing her being in a residential school it is another thing having her in foster care its all a nightmare and I know it all comes down to funding and what the cheapest option is...any ideas on schools that are residential ????

Getting to the stage of saying sod it i will have her home give up my job and care for her even though I know it would end with one of us seriously injured or dead!

REally had enough now

 

Hi.Are there any foster carers who would be able to cope anyway ?

I know in my area CAMHS are involved in specialist foster carer training for complex cases.

However if two psychiatric nurses at a time are still needed in a specialist out of county placement and it is difficult to find a specialist school I would be surprised if a foster carer would feel equiped to cope safely.That is no way a reflection on your daughter but I do have some idea of the level of support needed to have required the sort of hospital provision your daughter has currently. Karen.