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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 .........

when is it? I know dont shoot me i am a disgrace for not knowing!!

queen

does anyone know the address for social services tunbridge wells?

Hi As some may remember my 14yr old dd with AS was admitted to a psychiatric hospital in DEcember for assesment, well she is still there and like a Zombie, she has been having auditory and visual hallucinations. We have had our 2nd CPA meeting to try to discuss a 52 wk placement for her she has a statement that was applied for last march, but has not been finalised, as now the goal posts have moved. I was informed at the CPA by the LEA that a 52 week placement will not be agreed as SOcial services have closed the case, at no point have socail services spoken with me met with me or my daughter, other than ARC on two occasions last October and November..... HELP!!! I don't know what to do where to turn its a nightmare!!! I am writing to social services to tell them we cannot have DD home due to safety and care issues, she tried to hang herself pre admittance and has frequently told doctors and myself she wants to kill me by stabbing or strangualtion, her sister has had to barracade herself in her room also on occasions......help some one please !!! I don't know enough about any of this to know what I need to do or say or to whom!!! my DD is 15 net month and has lost this whole year educationally and last year also! she is very bright and not at all stupid as it would sometimes appear! HELP!!!!!!!

Hi , No advice to offer as my dd is in a pychiatric hospital at present she is coming up to 15 with AS and we are now waiting for the LEA to agree she needs full time residential placement they said she coud cope in mainstream which she hadn't been doing since she went there until the school finally agreed she wasn't fit to be there, infact she hasn't been in school since October. It's just good to hear so many people have children who are in residential placements and doing well. It gives me hope as she has spent three months in hospital and we are hoping soon that she can move on to a residential placement once she is more under control. I am sure it is a case of highlighting all the things your child likes at the school good luck

glad you can see the dificulty of the challenge i am setting....some people don't appreciate how addictive it can be

i'm not a quitter so don't feel I can give up anything if i did I think it would be shooting purple spotted flying pigs

great will not be able to look at packet the same agian.... people will wonder why i have gone crazy laughing ato myself next time i go to a shop that sells them I bet...thanks guys !!!

oh and never buuy pre made pancakes...... or mash or anything like that...not allowed it's cheating apprently

I am so lucky my husband is an ex chef....so he will be making pancakes, he has also been making them for the last few weeks......as they are great comfort food....he puts melted butter in his batter....yummy!! I have a pile I start with lemon and sugar...then golden syrup..then a plain one then brown sugar and lemon etc......all in a pile then i roll it together and it's one huge swiss roll of a pancake...yummy!!!! Any one is welcome...lol but I am not good at sharing

now you see I think the painting the stripes into a pattern would've been much more fun!!! Some wonderfully helpful idea's....mumble I will recomend you to friends for painting home interior idea's xx you have all made me today...many thanks x

thanks guys, going to get on this, some authority is already paying for her hospital care and I am sure that is a similar amount as the staff to children ratio is rather high and for instance she has needed two staff members to escort her out on a walk, she has been there 11 weeks now and I have been looking over the papers and it was decided on Nov 24th 2008 that specialist provision was needed, but by 8th Dec 08 she was admitted to the psychiatric unit with the hullicinations so we have this added complication, but I am going to look at the schools you have all suggested and really really greatful for the help and advice as I feel very alone on all of this. so thank you

thanks guys, won't bother buying anymore flavours...we got the duck ones as they seemed a kinda normal flavour....and they are odd!!!! imagine how much you could save on weekly shopping if you ate local squirrels...hmmm

Hi Guys, Yes provisional statement was issued pre sept 08, the school said they could manage her and then after 2 weeks said they couldn't, we then had to ask for special provision to be made and panel decided in Nov 08 that special provision was needed but the units they suggested don't have space or aren't suitable as at her age they support inclusion to mainstream...and none were residential, the LEA said that she would be expected to taxi to the school, one of which is a good hour and half away!!but her original application for the statement was behavioural, which changed with the reports that were carried out when she was diagnosed with AS, but now she has the psychosis also, our LEA officer is useless and refussed to come to the CPA meeting and has still not managed to give the hospital dates she can attend a meeting. We did have some one from funding at the meeting who agreed they would push forward with this, I just am so frustrated as we have been offered no support really and I am having to learn as I go, as I am sure most people do. We have not yet had any letters from the LEA about residential placements or whats going on.It seems a bit like out of sight out of mind!!!! its just so frustrating

Hi, As some people may remember, my DD has AS but is currently in a psych unit as she has auditory and visual hullicinations, and yes she is still there nearly 11 weeks on with no answers!! Just pumped full of anti psychotic drugs!!! My question is, I applied for a statement in March 08, after getting reports form all professionals panel decided to ignore what they all said and said mainstream education will be fine with 20 hours support, the school who had said they didn't think she could function in mainstream doone a complete turn around and supported the panel descicion, 2 weeks in to term or September 08 the school decided she wasn't functioning and things got progressively worse until finally by half term she was taken out of school , appeals were sent to the LEA, and panel then looked at specialist provision and agreed strangely!!! they named 4 units that they would send her details to to see if they could offer her a place, then she got admitted urgently to the hospital Dec 08. We have had a CPA meeting where they have agreed that she needs a 52 week a year placement, but our case worker from LEA refussed to be there, there were some funding people there who agreed, now we are in Feb 09 and I have had no help from LEA about schools nothing!!! Who should be finding the correct placement???? We are nearly a year on from my initial application and are no further along!! How long should this take? My daughter is going to be 15 in a couple of moonths she has missed half of year 10 a very important year, she is also academically not stupid. One issue we have is that the LEA is Kent, the hospital is Surrey and the school is East Sussex, so we are cross counties, we live in Kent though, and our psychiarist from CAMHS seemed to think there wasn't anything suitable for her in Kent...... This may not make much sense....but if anyone can fathom what I am saying help please!!! Does anyone know of full time residential schools? or who I should now be harrassing about getting this sorted??? I am totally at a loss, my DD was only diagnosed in June/July 08 so I am learning as I go....I have to say its been a wild roller coaster for the last 18 months - 2years!!

Hi My DD has awful problems with Bra's, firstly the fact she needs one sent her into crisis, but at 14 she has huge boob's and needs an H cup bra...try I too am rather well endowed and have to buy online, luckily they have got a nice range of cotton ones, but she has to have wired ones....at first she refussed but now she is so large she needs the support. she did start with crop tops and will still wear them over the top of the bra!! I know this is no help, but we all have to face this as some point I guess.... I think its just trial and error I used to spend hours in m&s getting her to try bra's...which she hated!!! now she has one style from my bra shop luckily it comes in about 5 colours so I can get her different colour if she wants. Just so you know you're not alone

J's mum....You did not upset me...we didn't really have choice camhs said they were doing a referal the next day the hospital called saying we could go in following day...so not really a choice and now if I want her out...which I dont cos she is not well enough I think they will section her. the only way to describe it is ...the lights are on but no one is home...or that my DD as we knew and loved her has well and truely left the building....my question is..is it normal for teenagers with AS to be psychotic and hear voices and see hallucinations...self harm is not so bad..well except when it was trying to hang herself..and I do feel a little worried as she wants to stab and strangle me..but it's all in a days work for a mum I guess.!!! CPA meeting today...they are asking for funding for a 52 week a yr placement...so guess it gotta kinda serious, but if thats what she needs so be it

I agree with jsmum, get back to see another gp...also try this.... Write.... You may have uni work to do but either with pen and paper or on the computer....personally i use the computer as typing doesn't hurt my hand as much...just write...types about you about the world about how you feel, if you feel nothing then type...i feel nothing...then as you start just let it keep going whatever you think type/write it...... It may not work, but it's something I have been doing whilst i am supposed to be working as i get bored at work if its not really busy...one day it will make a great novel !!!! You don't know until you try....

Hi, It sounds awful and I know living with a teenager is difficult at the best of times, I hace one DD AS 14 only got dx last summer and things are impossible for her, but she doesn't really have any NT traits...well not according to an online test she sat and done with us. I have also done this test as I can see alot of me in her and the more I learn about AS the more I can relate to why I am the way I am in some cases, I scored 120 out of 200 in favour of Aspie, so I am kinda half and half and I now know why I find some situations impossible and frustrating, my husband, other daughter and mother have all taken the test and came out NT my brother scored slightly higher than me...I think there are alot of people who have AS traits and never realise, it very much depends which ones I guess. I have been sent a great book by one of my DD Dr's ...its called... Pretending to be normal, your daughter might find it useful to read, I am learning more about myself reading this than about my daughter's struggles as the author is some one who has struggled through life not realising she has AS until her daughter was diagnosed. This may or may not help, but remember your not alone on the roller coaster...i hate the ride and wanted to get off of it, but I can't, all i can hope is it changes from a roller coaster to a merry go round one day

Hi guy's, we have a cpa meeting monday morning but my contact at :EA cannot make it and neither can one of the people for SS...not that they have ever met me or DD. What her current DR suggest's is the voices and halucinations are due to apspergers.... as this is normal in adolescent children with aspergers...I wonder .... I don't feel her behaviour is normal AS Behaviour. It is an awful roller coaster ride and to make it worse I have run out of my citalopram..( much needed) and haven't had if for the same sort of time she has been away as we moved and had to sign on with a new dr but I haven't got round to it not with everything going on...you probably all know what it's like working worrying thinking of everyone and everything other than yourself. They have talked about holding her under mental health act...we have managed so far with them not, but they are holding her under parental responsibility as she isn't deemed Gillick Competant...oh I am learning so much!!! It sounds awful but...here i go I feel so bad when I admit this.... I don't mind her being there I know its for the best for her I just worry they are not looking into her mind enough and just blaming AS. She is not capable of living in society at the moment as she is so very vunerable and looking how she does doesn't help as she is 5'8 ish and has a figure people would pay a million pounds for!! yet she doesn't understand the older men who have said they are her friends are just grooming her!! Not only that, I cannot cope with her and knowing the voices tell her to harm me aswell as herself I do not feel safe....so I am a bad mum because I am not sure I will ever want her back to live with me full time. This causes more emotions as I know you all understand. Just wonder if once she passes a certain age the psychosis will go and leave my DD who just has AS and I doubt that can be answered, but thats what I want to know...do most AS teenagers go through psychosis?

hi guy's, Well it's been a while, so much has happened...DD 14 asd/ Aspergers.....As some of you may remember DD was sent home from school with the school saying she wasn't fit to function in school back in November, County Panel have now decided specialist provision is needed and named four units all of which advocate inclusion even tho camhs says inclusion not suitable for DD....it got worse from that she had been having auditory and visual hallucinations, the early intervention team were due to start assesment, but it got so bad and she was so unsafe as was I that she has been admited to a special hospital, the DR's there do at least agree it's not because of canabis, but are saying its normal for children her age to have these kind of hallucinations, but have changed her meds from abilify to orlanzapine and have now had to increase that dose....What ~I want to know is has any one else had this happen...is it normal?? She has now been there 5 weeks and wasn't allowed home at christmas as she is too dangerous and unpredictable, we have only been able to visit in the hospital for the last 2 weeks, the hospital is about 65 miles away. Just feeling a faliure and rubbish and unsure about the future and everything as I am sure alot of us do at times... Just want some answers...is this normal?

Noooo Gonna miss you...even tho I am fairly new here you have helped so much. Good luck...and I agree with everyone else you are a wealth of knowledge and must pop back from time to time and let us know how it goes for J <'> <'> <'> <'>

Hi, Not sure if this helps my daughter is 14 and the only way to describe what she does is...she makes obsesive associations some of which are in appropriate, one was with a female PE teacher, one with a senco worker, and also with her sisters friends and recently with her sisters boyfriend. She also thinks the bad people who have got her hooked into their group are he friends but they are bad people who use her to carry drugs etc....she is so vulnerable but at 5'9" she doesn't look it!!! I cannot make her understand about friendships!!! Your not alone! Not sure it helps though!

Hi All, well what a week!!! My DD has had some work home from school, she still doesn't know she won't being going back, we are slowly trying to get to that...she is a self harm/suicide risk and also a flight risk so can't just tell her as she is desperate to go to school and learn!! her older sister ( NT 16) thinks it's so unfair that she has to get up in the morning and go to school while her sister doesn't have to ...ha ha ha!!! We had our assessment at CAMHS to see about an inpatient assesment that was wednesday and at the end of that my DD was offered a place for a two week assessment, so on Monday I have to take her along to go in for two weeks, admitedly the place looks great I wanted to stay there...ha ha ha But it is a worry as it is a strange place, strange people new rules...the one good thing is it is very regimented which she will like, but I am worried. I know in my heart it is what she needs we need to work out what her needs are why she is hearing voices and if she can get help to deal with it, but it still makes me sad and I am still worried. All the time I have appealed the provisionary statement and I am now awaiting a date when County Panel will look at her case again!!!