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Janejay

What to do until we see CAMHS

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I’m sorry this is so long ! 
My daughter is 16 and is due to start a college in September. She’s been showing OCD symptoms for years which we first went to the GP to discuss 2 and a half years ago as we were concerned they were getting out of hand with the start of GCSEs. Unfortunately our suggestion was dismissed and we’ve been back and forth while the symptoms gradually worsened. I wasn’t as well informed then as to the variety of form OCD can take. We were told to access help through school which took a very long time to get her to agree too but then turned out to be no help at all. Finally in October we were given details of an NHS short term therapy service and went on that waiting list. The GP referred her to CAMHS after Christmas this year largely I think because they were concerned about the effect on my mental health too. 
We’re now at the stage where she and I are sure she has OCD but we have no diagnosis. The short term therapy came through recently but they’ve told us it’s not appropriate for her so they won’t treat her. This is because she struggles to talk to strangers. I’m trying to help her with this but it’s genuinely difficult even though she really want to get help. I’m not sure what to do. 
We’re told CAMHS is unlikely to see her until at least September and I don’t know what we can do next. 
She’s struggles with feelings of things being ‘wrong’ and often can’t explain what wrong ‘it’s just not right!’  She feels she has to straighten or tuck in bed clothes, cuffs,  sleeves, hair, socks, belts etc until they feel ‘right’ and is not getting to sleep until very late. Washing, teeth cleaning and showering take a long time as she feels the need to be sure she has cleaned thoroughly and she can be triggered by unexpected mess.

Homework and revision was taking hours and hours to do as she constantly needed reassurance about decisions, words used and if her work was right. Any research or open ended task was even worse as she couldn't decide when she was finished or what to choose to work with. Revision was also a problem as she felt compelled to use all possible revision tools instead of being able to choose just one and she was continuing rewriting revision cards and notes. 
This was all making her life entirely about school to the point she was missing school due to the overwhelm and tiredness. At school she hid a lot of the effects but as time went on it got harder. We weren’t believed when we tried to explain her difficulties because she had good grades. Partly from staying up until 3 am to revise!
A lot of her compulsions involve reassurance seeking from me and repeating over and over ‘I don’t know what to do’. If I don’t answer in the ‘right’ way she gets angry and this keeps repeating for hours. Sometimes hugging works, sometimes it’s not right. If I leave or I’m not there  or working she’ll text me 20-50 times and call my phone over and over. I have to switch it off. This is usually triggered by her feeling she has things to do but can’t manage (school work, getting up, showering, buying clothes for college, art things she’d like to do -really any task will cause this). She is very reluctant to do things without me and wants me to be with her.  
She’s particularly triggered by things involving choice and uncertainty and the current 3 worse things are clothes shopping, deciding on which college to go to /thinking about how she’ll manage to get there and function and resuming some art work (her favourite subject but she’s not produced anything since we went into lockdown and was no longer under pressure to do so). 
She spends months researching options,  wants me to help make every decision and answer questions about all the uncertainties. I’ve ordered and returned so many clothes I’m embarrassed about it and she still wants to try more. This is also partly because she is very sensitive to fit and feel and things feeling ‘right’. But even if we buy something she then starts looking for the next thing which is better or slightly different. 
I am managing to set some boundaries around her reassurance seeking and am no longer so closely involved in her waking and bedtime compulsions and she’s better at allowing me to work.  I spend a lot of time reminding her that she’s not in danger and the feelings are just bad feelings which will go and that she doesn’t need me to decide or reassure her ( though I’ll always give her a hug). It just involves so many things! 
one positive development of being home is she’s started to do the Joe Wicks PE which seems to help calm her and I’ve now managed to get her to do it without me. She’s also done baking and some cleaning without me. 
But I don’t know how she’s going to decide on a college or manage to be at college. It is difficult to discuss what help she will need with them given we have no medical help or diagnosis to support  what I’m saying and her OCD isn’t a more well known type. She wants  to take A level art, sociology  but (unsurprisingly) is not sure about the third one.  Could be psychology or criminology. 
I’d really appreciate any advice you can offer. 

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Please someone reply. I’m struggling to get her to do anything. She just stays in her room in bed       

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Is there any support from the school? I know our local high school has a mental health worker, obviously not for this level of need, but perhaps they could give some practical advice or support in the mean time, or from the college she is hoping to attend. I know some are working from home via phone/video call.

Have you checked out the books to buy from this website? The more knowledge you have the better to be able to help your daughter. There may be some resources for young people if you browse the website.

You are doing great and I hope the help you both need won't be too long in coming.

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Thanks so much for replying! Our high school has no mental health worker and wouldn’t make any changes when we asked. It makes me really angry. We wanted for her to drop a subject to take the workload pressure off but they wouldn’t  agree. 
Art was causing a lot of issues as she was being encouraged to produce near photographic work but the art teacher was openly hostile to the idea that this was a problem. 
Now she’s not going to take exams so there is no school work to do and all her structure has gone. She’s not agreeing at the moment for me to talk to college about how they can help. I’m not sure if I should contact them anyway without her consent?
I've read a couple of OCD books which were really helpful as they helped to confirm that what she does is what other teens do and I’ve just ordered the teen version of breaking free from OCD.  

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Hi Janejay,

I can't understand the logic behind the decision to not proceed with helping your daughter because it wasn't 'appropriate.' I would have thought they have a duty of care to tailor treatment towards your daughter's current needs and help her work on her feelings around talking to strangers. I think your next step has to be having a word with our charity's Chief Exec, Ashley...he's helped so many navigate accessing treatment, his no's 03332 127 890. I think I would also be tempted to contact the college for their thoughts. Your daughter might not be over the moon about it but at the end of the day you'll be doing it in her own best interests.

You're doing exactly the right thing managing and setting boundaries tho, that's an important step to take. The more you can very gradually refuse to be a part of your daughter's compulsions the better really, but of course that's going to hard given your relationship to her as her mum. What's really positive is she's showing signs of taking steps herself in her recovery with the PE, baking and cleaning. Having something to focus on other than the thoughts plays a vital role in recovery from OCD.

I wonder if perhaps there are any other activities you could talk through together that she'd like to do and help to create a bit more of a routine that was lost with Covid? How are you, are you coping okay?

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On 10/05/2020 at 16:55, Hal said:

Hi Janejay,

I can't understand the logic behind the decision to not proceed with helping your daughter because it wasn't 'appropriate.' I would have thought they have a duty of care to tailor treatment towards your daughter's current needs and help her work on her feelings around talking to strangers. I think your next step has to be having a word with our charity's Chief Exec, Ashley...he's helped so many navigate accessing treatment, his no's 03332 127 890. I think I would also be tempted to contact the college for their thoughts. Your daughter might not be over the moon about it but at the end of the day you'll be doing it in her own best interests.

You're doing exactly the right thing managing and setting boundaries tho, that's an important step to take. The more you can very gradually refuse to be a part of your daughter's compulsions the better really, but of course that's going to hard given your relationship to her as her mum. What's really positive is she's showing signs of taking steps herself in her recovery with the PE, baking and cleaning. Having something to focus on other than the thoughts plays a vital role in recovery from OCD.

I wonder if perhaps there are any other activities you could talk through together that she'd like to do and help to create a bit more of a routine that was lost with Covid? How are you, are you coping okay?

Thanks, those are really good ideas. I think we might try gardening as she’s pretty interested in plants and says she will help me with the garden.  
I‘m up and down. I get really optimistic when she has a good day but then find it hard to be patient - I just want her to get better! I really struggle to keep my temper at times when she’s rude or aggressive. I thinks she’s not really aware of how horrible she can be. But finding this forum is helping me realise I’m not alone and not imagining things. Getting the balance between helping her and preserving time for myself is tricky but I think I’m starting to go in the right direction now. 

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You're under an enormous amount of pressure until CAMHS come through and begin providing more support...it's entirely understandable if tempers become frayed at times. Please do consider asking Ashley's advice...even with the current situation your daughter's still entitled to receive a good standard of treatment, and relatively quickly.  I'm glad tho the forum's helped...you are definitely not alone, many families who've used the charity have been where you are now and their children are now living their lives to the full again. 

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I’ve emailed Ashley as I couldn’t get through on the phone. Not heard back yet but I’ll try calling again tomorrow. 

On 13/05/2020 at 00:30, Hal said:

You're under an enormous amount of pressure until CAMHS come through and begin providing more support...it's entirely understandable if tempers become frayed at times. Please do consider asking Ashley's advice...even with the current situation your daughter's still entitled to receive a good standard of treatment, and relatively quickly.  I'm glad tho the forum's helped...you are definitely not alone, many families who've used the charity have been where you are now and their children are now living their lives to the full again. 

 

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