kc73

Thanks Snowbear, Wise words. I'll keep you posted. Kc x

Hi Snowbear, I just thought I would give you an update. The hospital referral went ahead and an their assessment was two weeks ago and we are now waiting for a bed to become available. Over the past few weeks I was able to talk to various professionals outside of CAMHS which has helped us gain some clarity. A lot of unknowns remain but we know - and now accept - that the next step is another hospital admission. Although the CAMHS Psychiatrist presented the main aim of this hospital admission, being to get dd onto medication, the hospital team have been more wishy washy with their aims for it. The hospital has a OCD programme (which I will be very interested to read) and I imagine they will go in initially to assess her before going forth with medication - willingly or otherwise. I was able to speak to one of the national OCD team at the Michael Rutter and I think they are going to liaise with the hospital team during admission which, if it happens, would be great. As for the MHA: what I have gathered / learnt from speaking to the hospital team, is that as the children are older in this unit (12-18) than the unit dd was at last time (5-12) then they have to be much more careful that children admitted to their unit are consenting to be there. DD was an inpatient aged nearly 11 to nearly 12 & on numerous occasions we had to semi-forcefully help her into the car for the journey back to the hospital following weekend leave , and similarly at the other end when she refused to get out of the car. And on a couple of occasions, staff (after a long period of time encouraging her to get out of the car) had to get her out themselves (forcefully but using their trained techniques/holds etc). It was very distressing for us parents but we never thought what they did was wrong. However, it seems now she is 12, nearly 13, the staff at this unit will not be permitted to do any of the above without legal backing ie MHA. And given dd is so resistant about going into hospital (we couldn't get her to the unit for the assessment so they came to us) it is likely that the MHA will need to be used just to get her to hospital - let a lone receive any treatment! The consultants agree that she is still of the age for us to take her to hospital on the admission date under "zone of parental responsibility" but if we are unable to physically get her there - in the car etc (and we acknowledge now aged nearly 13 this will be v challenging) then (unfortunately) the MHA will be used. Between now and the admission (about 3-4 wks estimate) I am having regular chats with her about her OCD, exploring how we,how she might be able to challenge her obsessions etc and help her as much as possible understand the reasons behind the next treatment step. But what do you tell a child whose answer to inpatient treatment, is "it didn't help me last time; what will they do that's different" etc ?? Best wishes Kc x

Hi Snowbear So there has been so much going on last week and hospital admission is back on the cards. This is what has happened: (to make it easier, P=psychiatrist, Y=psychologist & C=the case co-ordinator, whose background is mental health nursing. ) So as you know the P had been very blunt to us about what she believed the next treatment option needed to be. This caused us huge stress but our research led us to believe anti-psychotics were not the way to go. In addition stress was compounded further by the very poor communication & by not having an opportunity to ask questions & to discuss the P treatment proposal in more detail. Then on Thursday evening the P called me (first contact since the previous Thurs) but I wasn't prepared with all my questions so it threw me a bit. However, in the short conversation we had, she said that she believed there were NO other options, and that CBT essentially been exhausted & that she has seen anti-psych drugs help. For good measure she explained that from this weekend she on leave for one month & also that the inpatient unit (IP) actually doesn't usually accept children until 13 yrs (dd is not 13 for another 4 months). I was left deeply upset after that phone call, feeling that not only was this perceived as the only treatment option, but that it wouldn't proceed for several months. This felt like torture - knowing what difficult treatment phase lay ahead but that have to wait a long time for it to start. After a lot of tears, hubby & I composed an email which pretty much demanded that we meet with someone face-to-face on the Friday. The case co-ord said we could see him, and even better for us (and a miracle!!) both the Y & P were able to join us for some of the meeting. The outcomes were: 1) The Y & rest of the team feel there no gain in pursuing CBT and that everything in that area has been tried ( but I'm still not so certain that they have really tried everything). 2) A referral to our local IP unit is only an option - singular (however they are nor presenting any other options. I suppose they are saying it is an option and that we don't have to agree to it.) (but what support will we get if we don't agree to it???). But it won't be as drastic as the P presented it to us, in that there would be gradual links made with the IP unit before any sectioning done (but sectioning still sounds inevitable in the P eyes). The team are very enthusiastic about this IP unit which is local to us as they say they have close links with the staff and quote the psychologist " they can plan a unique treatment package" for our dd. This all sounds great - but in reality, would it ever be like that?? In addition, our long experience of IP stay for dd makes us a lot more sceptical about what IP units can offer & we won't be so easily convinced by what the prof stay. In addition my friends child went to this IP unit & says it mostly kids with eating disorders, which her child didn't have, but her child was very often treated like she had - so it didn't sound like the care that individualised. But in our favour we have the enthusiasm of the team about this IP and they know how sceptical we are - so will this make them more committed to making it work?? As for the use of anti-psychotic drugs and the evidence I have found against their use for OCD: they said that they feel dd does not have pure OCD. Um. Not sure what they meant by that. The P believes these drugs could help. We kept addressing the fear that there high chance (going by evidence) that it won't be effective and then there is all the trauma she and us have gone through with forced injections and god knows what long term consequences in to adult life. The P just took the angle that our dd is a complex unusual case of OCD & that she has seen these meds help kids with OCD & that essentially, we running out of options. We asked about the team contacting other specialists in the field of OCD, such at Micahel Rutter centre - they listened but didn't commit to contacting the, to get another opinion. So at the end of this meeting, hubby & I felt a lot better just to have been able ask questions face to face and to be listened to. We actually ended up agreeing for a referral to be made to this IP unit. . As far as waiting until she is 13 , the Y said did can go in aged 12 and told us not to worry about funding issues (although we know these things inevitably slow things down). There is no known time frame for admission. Last time we waited about 2 1/2 months. The rough plan would be for the hosp consultant to visit us at home first & we have chance to ask questions. As far as how it might pan out as regards to a formal or informal admission, I still don't know. I guess it depends how our dd is at the time. The P gave us the impression on her first visit that an ambulance would turn up, she would be sectioned and then taken to hosp. for the inevitable. It was wrong of her to give that impression and she actually did apologise for this. Final outcome: we came away feeling much better than we had all week. However, very soon after the shock of it all starts to kick in again & more questions arise: Shouldn't the P try prescribing SSRI's whilst in the community before admitting to hospital? Why can't CBT be pursued? And I have read around anti-psychotics again and the side -effects sound terrible. Maybe a IP admission is required - a different set of eyes etc, but I still feel extremely unhappy about her having anti-psy. Thoughts on what else we might be able to do & what questions to ask? Would Ashley be able to contact Michael Rutter on our behalf. I do have contact names and I know they will remember our dd following there review of her at the other IP unit in Dec 2015. A quick summary on our dd condition: she has continued to deteriorate. No school, longer on rituals, esp toilet and at the end of last week she started to limit her fluid intake so she didn't have to go to the toilet so much. But this weekend she is brighter and she amazingly took herself out for a walk yesterday. Sorry this is so long. Kc x

What I meant to say in light of her rituals involving activities of daily living, this takes up so much of the day at the moment that she isnt able to get to school. But if she were able to get there for say, 3pm and have lessons at that time, I'm sure she would keep her OCD controlled for duration at school. Kc

Thank you for another very helpful reply Snowbear. I am sorry that the help wasn't there for you as a child; it must have been awful for you. At least there's more knowledge and openness about OCD & Mental health now (although still a long way to go). My daughters OCD is extremely entrenched and like you, I know she has developed some strategies. Her OCD rarely shows itself at school but we have been told this is fairly common with OCD sufferers to hide it at school. The positive of this, we have been told, is that it does show that she does have some control - and the OCD not totally controlling her. However, her main rituals have always been associated with "activities of daily living" - i.e. washing, dressing, going to the toilet etc. In fact her OCD symptoms first showed themselves following an episode of cystitis when she developed toilet rituals which she believed made the cystitis symptoms less. Her rituals became very elaborate very quickly, and within a fortnight she had decided it better not to eat any meals as she HAD to go to the toilet before eating a meal. She was only 5 at the time. Going back to CBT therapy, I like what you say about being shown OCD is a choice. My daughters current therapist, a clinical psychologist, has a lovely manner with her but when she wants to push her more into therapy I think she has said to her something like "seeing me is more than just having a chat " & we have been told by the therapist that our daughter gets very stressed when OCD directly discussed and one time she reported our daughter became very oppositional and that it had really shocked her!! (I was thinking, surely you have seen many stressed kids in CAMHS). This was all in the first couple of months post discharge from hospital, and is what triggered the therapist quite early on inferring that as she wasn't able to do proper therapy with our daughter, then maybe sessions should stop. They have continued but we parents are regularly informed that she is not providing therapy, that it is more problem solving about a particular worry or anxiety our daughter may have, and essentially that someone else less qualified could do that role. I wonder is our daughter has received too much "negativity" , that she has an illness and has to change or she not going to be able to be successful with career etc in the future. I think us parents have been guilty of this a little this past month since her education has been very very minimal. Only last week she blurted out "I know I won't have a career mummy; I know I won't get my GCSEs". Sometimes you hope being faced with the reality will help kick start her to engage in therapy but maybe it;s back fired. However, for most of her absence from school we don't make too big a deal of - but I'm sure she must know we would be concerned by her not attending school and naturally would be wanting to help her. I shall try and take a different approach with her and see how I get on. We could get assigned a different therapist but I know it takes a very long time for our daughter to gain trust and for the therapist to get to know her. As far as the forced medication route goes, following all my research and wonderful help from OCD UK & Youngminds, my husband and I agree forced medication is not the way to go - primarily because there is no evidence to suggest that the anti-psychotic meds will help. Frustratingly, I have only found out today that the psychiatrist never fed back to the the rest of team involved in our daughters care, after her visit to us - which was at 09.30 so in theory there could have been time to hand over to at least one other team member or write on the electronic notes - especially as she was then off for a whole week. I have felt in tormoil for a few days, wondering if this is the route we are going to need to go down and if it was the treatment option that everyone agreed with. I think (do you agree?) that it was pretty heavy information for the psychiatrist to share with us without having any opportunity in the near future to discuss what we were told. She was with us about half hour and you don't have time to think and reflect at the time. I'm cross that the CAMHS team as by ignoring all my messages, my anxiety grew. But you, Ashely and other charity related folk were there and for that I am EXTREMELY grateful. I hope I can help others in the future. Huge Thanks Kc x

PS I have been to the Young Minds website and actually phoned their help line. It was useful to discuss the issues we face but most of the info they gave I already knew. I've been trawling the internet so much for information! But with your helpful info and advice, plus what I have read, I feel more ready to discuss with CAMHS alternatives.

Snowbear - such a helpful, knowledgeable, detailed & supportive reply. Thank you so much for taking the time to write it. A bit more background: Whilst she was in hospital, for the first few months they didn't prescribe medication as they knew how anti she was about taking it, plus they felt she was making some progress with CBT. Unfortunately a collection of events led to a big deterioration and the consultant then decided that she had to take medication, and as a motivator at this time, the consultant explained to her that she would not be allowed weekend leave home until she has started to take the medication regularly. We consented to all this. I spent each weekend at the hospital with her during this time (it was 85miles from home). However, despite a lot of psycho-education from the nurses and pharmacist, plus not able to go home at weekends, she still refused to take the med. The nurses were really good with her and I don't think they could have done any more to help her take it. So after 5 weeks the consultant asked Bruce Clark (lead of OCD Michael Rutter Clinic at Maudsley) to review her. He advised that the hosp stopped offering the medication as she was presenting as not ready to engage in treatment. He also advised the hosp team to change the focus to increasing her functionality rather than directly trying to help reduce her OCD symptoms. Our local CAMHS team however, felt uneasy about having her discharged to their care without her being on medication, citing that she sounded too unwell to be discharged & they discussed then about the MHA . However, the hospital consultant & team felt it not right to force meds using MHA, for every reason that you stated: anti-psychotic med may not be effective, trauma & loss of trust. We really wanted her to try medication but agreed with the hospital consultants decision. So she came home in April, and fortunately she improved quite a bit during the first weeks home; she had become quite depressed during the last few months in hospital. However, her OCD was still very debilitating for her. As for CBT, she began seeing a clinical psychologist every few weeks at CAMHS (I would have liked her to have had more frequent appointments - at least fortnightly) and the initial aim was not to deliver CBT, but to allow my daughter to gain a trust & openness with the therapist, to help build up towards working on more active "therapy". However, just after a couple of months, the therapist questioned the point of continuing with her as she felt she wasn't delivering any "therapy" to my daughter. But she carried on and is still seeing her, although at every review meeting with have, CAMHS question if there any benefit continuing with sessions with my daughter, and they were going to stop. Until this big deterioration. Sorry long post. I have heard a few times the believe that any child should be able to engage with CBT with the right therapist. But how do you get the right therapist, and it's never a guarantee that the therapist won't leave her position half way through treatment. I would love to hear more of a Clinical Psychologist opinion on delivering CBT for OCD & if for them as therapists, it can become apparent that the child is not ready to take part in treatment and that there isn't any gain from continuing - at that time? Aged 7 she received out-patient CBT at t he Michael Rutter & even the therapist there couldn't crack her!! How do we and/or the therapists get our daughter to engage-in CBT?? That would be the optimum. The idea with the medication I guess was the hope she it would help her to engage, but I totally agree, the use of an anti-psychotic drug isn't the way to go. But having said that it feels we are running out of options. And maybe that's what our CAMHS consultant feels too. How long is a child left unable to function , go to school etc without doing something more radical. But maybe the better option is to just cope the best we can and hope she will improve on her own accord. It's just so draining & so worrying. How long did it take you to decide you would/could engage in CBT? We are discussing it with her regularly but ger resistance remains firm. Thanks again Kc

Thank you Ashley. I actually sent an email to you via OCDsupport address with more information. This is a complex case. The reason my daughter is fearful & refuses medication is because she can't remember life without OCD and she fears what she will be without OCD - even though it has been explained that the aim would be a reduction in her OCD rather than it going completely. I also think she is in denial about how much the OCD is affecting her life. These areas have been explored but she usually becomes quite agitated and oppositional if it's pursued to much. Kc

Hi - I have been on this forum intermittently for about 7 years! My daughter is now 12.5yr and has severe OCD for 7 years and despite a lot of expert treatment (Maudsley OCD Clinic & long hospital admission) her condition remains just as severe (although it fluctuates in severity over the years).The main reason for this is that she will not engage in CBT sufficiently and refuses to take medication. She has been out of hospital for 10months. She had been able to get to school for about 75% of the time but since January she has greatly deteriorated again and her OCD rituals are taking up so much time that she is unable to get to school at all most days. So with this most recent deterioration the CAMHS psychiatrist feels if she doesn't agree to try medication willingly, then they might need to use the Mental Health Act to make her and the worst scenario (which I find very difficult to think about) is her been given it forcefully by injection. Anyone have any knowledge about the use of the Mental Health Act on children? I'm finding I need to get as much information as possible before we end up going down this route. Thanks Kc

Thank you for your replies. Bushbaby - I'm so sorry to hear how severe things became when your daughter was admitted. My daughter self-harms but it's low level. The two units that CAMHS have referred her to are Acorn Lodge linked with the Maudsley, and one based at Great Ormond Street Hospital. Acorn Lodge we were told yesterday have agreed to assess our daughter, with an estimated assessment date being around Easter. The thing is, the situation at home with her is so awful, we don't know how we can continue a few more days like this, let alone a few more weeks. We just manage to get her into school before the end of the school day. Sometimes with only 20min left!! But on some days she does a club at school at the end of the school day and actually this is therapeutic for her - and us. Then she gets home and we start all over again until about midnight. I work two short days a week and going into work has given me some respite. I'm only able to continue with work as my husband has been permitted to work at home for those two mornings. But now she not even getting to school by lunchtime, so it impacting a lot more on our work. I so don't want to give up work as it keeps me sane. And we need the money. Yesterday I was near to a full on breakdown. What other options are there to surviving the next few weeks? Sorry for the rant! Kc x

Bushbaby, Thank you for your reply. The story is very encouraging and helpful. Do you mind if I ask you a few more questions? What unit did your daughter go to? Do you recall how long you had to wait from time of referral to admission? We live in Hampshire. There is a unit near us but only suitable for children aged 12+. Referrals have been made to two places in London. Thanks Kc x

Hi Again My daughter has had OCD for 5 years and I posted a few weeks ago explaining how severe it had become again. We have been waiting for more intensive input at home for a while now. Finally we had assessments last week and the conclusions are they feel she should have treatment as an inpatient. We know it will be a slow process to find her a suitable unit etc, but it would be really helpful if anyone has gone through this process and can offer any advice. Although we know she needs intensive help, it's really scary . Will she hate us for allowing her to go to hospital? She is 10 1/2 and in year 6 - it feels a bad year to be taken out of school - but it really is silly of me to say that when for the last few weeks she has been unable to attend school. Thanks Kc x

Hiya, Thank you so much for your reply - really appreciated. When our daughter started CBT she demonstrated a very good understanding of the theory behind OCD and Anxiety. I think the therapists thought she was a mature intelligent girl, and that she would engage in the E/RP. However, she couldn't and began to express her fear of not having OCD as she feels she doesn't know what it is like not to have it. She still feels this way. We have tried self-help books a few years ago and at times she would engage in them but not significantly. I have written a letter to CAMHS again today (when I phone the therapist rarely phones back, but if I write a letter and attach via email they will forward it on). As I type this she is on the toilet....she has been there since 17.45 ! (It's now 20.10). She has demanded no one comes upstairs whilst she is on the toilet, and we have tried to accommodate this for the sake of her hopefully coming down at a reasonable time for dinner. But my younger daughter was getting upset as she wanted something from upstairs so I went up and this caused her distress. Then she was demanding the kitchen door was left open (she claimed she could tell if it was open) but my husband was cooking and we told her it would remain shut. This made he even more distressed. I give up. Hubby and I have sat discussing whether when she finally comes of the toilet, whether she should be allowed her dinner or not. We have been told in the past, OCD related anxiety or not, that we should set boundaries of acceptable behaviour, such as times for meals. But if we don't allow her to eat she most likely will continue to have a meltdown and scream and cry and scream and cry! Last night she seemed to be getting ready for bed at a reasonable time....until she realised she had not gone to the toilet before cleaning her teeth. This led to 2 hours of distress as she begged for a solution to reversing the teeth cleaning, feeling utterly awful that she had broken one of her rules. When she gets like this (like many of OCD sufferers) there is no way out. It just goes on and on and you feel like you are going crazy! It's a nightmare. As you know. This morning we woke her at 06.45. She got into school at 12.30. I wish we could get a break. I really do appreciate your reply. Kc x

Hi All I have not posted on this site for over year. I have a daughter who has been diagnosed with OCD since she was 51/2yr and now is 101/2. Most of the time it has been moderate to severe but we have had a few periods of time when she has has good few months. The last was last April-June and she was so much improved that we almost believed she might stay on an up. She went downhill gradually since June, and dramatically since October. Summary of past treatment: CBT locally, CBT at the Maudsley, medication, and currently play therapy. Nothing has had a significant impact on her OCD. Not even the Maudsley! After a year they stopped treatment as minimal improvement which they put down to her not being able to engage effectively with the OCD due to her age. She was 9 then. We then had a long gap of no input from CAMHS as the local therapist withdrew input after the Maudsley recommended a break from CBT. But starting last summer, she started to see a play/art therapist at CAMHS. Medication started when she was 6yr but she refused to take it. We tried drops of an SSRI med in her water but it was difficult to work out how much med she was actually taking, plus it wasn't having much effect so it was agreed for us to stop. We would like her to try medication again but she refuses to take it. Over the past few months the serverity of her OCD has meant she has been unable to function properly on all levels. Certain areas are sometimes worse than others, but overall it includes not been able to eat properly and on occasions has not eaten all day; she takes so long completing all self-care tasks that she is late for school everyday (the school told me her attendance between Sept-Dec was something like 75%) and gets to sleep very late (11pm-1am) She doesn't have baths that often as the rituals take over and it takes so long, even she doesn't want to have to do it. At the moment she regularly spends over an hour on the toilet. Sometimes 2+h. She missing out on social activities. She is distressed everyday for hours. Screaming and crying and wanting us to get involved in rituals such as having to repeat sentences and moving things. We are very well informed about OCD and the dos and don't, so know we shouldn't do what she wants us to do, but that's in an ideal world, so in order for us to function, get through the day, we do sometimes do what she says. The tension in the house is mega. More often now we are losing our patience and shouting. Which isn't positive for anyone. We have a younger daughter who is 8 and has started to express some v unhappy feelings about family life with her sister and OCD. So we now organising private therapy for her! We have no family life. We are unable to go out anywhere as a family without it becoming unbearable and you swear you are never going to do it again! Sometimes she self-harms but not in major way. The worst has been her sticking pins into her arm. CAMHS are aware (or should be) how we feel our family is disintegrating. At times I think she should be admitted to inpatient care - but where to? I'm feeling like that right now. On a desperate day last week I phoned CAMHS to speak to our daughters therapist but she wasn't there. There was no one else I could talk to (they said they are not an emergency service) and their advice was for me to take her to A&E. Does anyone know what we can do? I'm tempted to phone NHS direct (or whoever it is now). I feel bad taking her to A&E as they are so overloaded but I think I might if I could physically get her there! What can we do next? This isn't a life, for any of us. My husband and I are just about keeping our jobs down. I started part-time work last summer after a few years of being a full time mum, and it's this part-time work that is keeping me going. HELP! Thanks KC x

Hi worriredmum, Thanks for your reply. As regards the exercise issue, we got a Wii Fit as family present at xmas, and I hoped this might encourage her. She does like playing on the Wii but she is less inclined than her younger sister to get involved with the Wii fit side of it. The small trampoline sounds a possible idea if we can find room for it. Again, I think it would be used mainly by her sister who a v active child and can't keep still ! As far as the CBT is concerned, we have been on quite a journey since her OCD started when she was 5 1/2. Initially the consultant didn't think CBT appropriate as she too young, but we did go on to see a couple of therapists that guided us through the ERP techniques which we tried top implement with some small successes at the time. Then after a time on medication her OCD improved significantly. We couldn't really pin point why as she had been on the medication for several months before the improvement happened. She was now 6 1/2 and although this was great, she was far from OCD free but the therapists withdrew. Six months later she came off med (long story to explain why) and she deteriorated and things became v bad. She returned to med but this time it never made a difference (and she has now been off it for 6 month and it's made no difference) We were referred to Maudsley and started sessions when she was 7 1/2 and initially it seemed v encouraging as she was engaging well and she seemed to have a good understanding behind the theory of CBT & ERP. She's a v bright girl. But as the ERP became more challenging she struggled greatly and would refuse to engage in sessions and often would run out of the room. AFter a course of sessions there over a period of about 6 months, progress was small so they advised a break from CBT. Locally we continued to see a CBT therapist semi-regularly (not weekly) and it was a mix of looking at her behaviour issues which had come secondary to her OCD and trying a bit of CBT. The main problem was that she refused to do any of the exercises at home. Things were up and down but in the summer last year things were absolutely terrible . She wasn't eating or sleeping well. We felt at crisis. A referral to an in patient centre was considered but it required funding and a long waiting time as it takes planned admissions rather than acute admissions. In the process of looking into this it materialised that the Mausdsley had not officially discharged her from their caseload and thus no further funding for treatment could be made until they discharged her. They wanted to see her again for a final review and there judgement was that she was still not able to engage fully in CBT and so their advise, which sent in the letter to our local CAMHS, was that CBT should not continue presently. This letter was received in AUgust last year, and on the spot our CBT therapist, who was also offering our daughter and us other support and implementing other techniques, discharged her, based on the Maudsley's reccommendation! So that is where we stand now. No CBT. They think it's because of her age still, and I guess all children are different in what age they feel able to see the long term benefits of CBT/ERP and fight back. OCD has become such a part of our daughters idenetity, that she regularly says she is afraid to be without it. So I kind of worry that she will never fight back. Fortunately she recovered a bit during the summer holidays and is no where as bad as she was in the summer but I fear she is on a spiral down again. She has developed a new obsession of her teeth never feeling clean and so wants to repeatedly clean them, and then is distressed and up all hours. She also gets so agitated if anyone of us goes anywhere near her when she doing rituals. And when I see near her, if she is an upstairs room, just walking upstairs agitates her and she cant complete task. Sorry didn't mean to be such a long email! Daughter on waiting list for play/art therapy at CAMHS and we have recently had an assessment for Family therapy. What input is your son having now? How is he? Kc x