14 yr old DD with debilitating OCD, not coping.

[gingerninja]

Long story short, DD suffered from anxiety for many years. Separation anxiety, hypochondria, sickness phobia and now OCD. Intrusive thoughts consume her and she’s exhausted. Am on the wait list for CHAMS to assess (again). We’ve previously had CBT (didnt help I think she was too young) she is so low and distraught anout going to school, trying to struggle through but she’s had a week off since half term (school is a massive trigger for reasons she can’t really determine but the OCD coincides with transition to secondary during covid) i just don’t know what to do in the mean time. She is in no fit state to challenge the intrusive thoughts and if she does they ‘get stronger’ can’t see through to the other side on this at the moment so would welcome some stories of people with experience. I don’t want to feed the OCD but her mental health is so low that I fear the damage I’m doing forcing her through each day at the moment. I don’t think she’s suicidal but obviously I fear an escalation.

Sorry to hear this.

My ds ,just 18, also has had debilitating ocd (intrusive thoughts) from the age of about 15.

He's had 3 courses of CBT and is now on an SSRI which has not worked so far.

What I've learned - try CBT therapy again (in our experience, unless your child is suicidal they won't make the criteria for CAMHs). Go private or through a charity such as Young Minds.

Call your local NHS mental health 24hr helpline if she's really struggling - can help to talk to someone different.

Download Headspace app and listen to some of the meditations.

Distract where possible - baking and tv have been useful here. Have the radio on in every room to 'drown out' the noise in her head.

Write down the worries and have a designated 'worry time' for a timed 10 minutes to go through them.

Wear an elastic band in wrist to 'snap' when thoughts are bad.

Download a thought CBT App - where she can write down thoughts and feelings behind them.

Speak to the welfare lead at school for a time out card, any other support and to make them aware. Do this asap.

See your GP for advice / to check bloods etc.

Read Parenting Mental Health - invaluable.

Hope this helps.

Has she tried visualising the intrusive thoughts? I was taught during my cbt for ocd to visualise it as a handkerchief in the wind. I dunno why but I always imagine a convertible 50’s style picture, and the intrusive thought is a pink/red handkerchief fluttering in the wind. I acknowledge it, hold it, and when I’m ready I let it go, and that’s the end of it.

I'm aware it sounds like a load of bullshit but it works for me. Another probably really stupid thing that helps is knowing that everyone has intrusive thoughts, it’s just thanks to the ocd I dwelled on them rather than brushing them off.

What distracting activities does she enjoy? Adult colouring books/arts and crafts/reading/games?

I feel for her, I really do. I was lucky that cbt and exposure therapy worked like a dream for me, and that I got access so quickly to help. Are you able to seek help privately?

Thank you both for your advice, much of this you won’t be surprised to know, we have tried with little success. She will shut conversation down very quickly, has a counsellor but barely talks to her about it and generally just says ‘she can’t’ to any therapeutic management and refuses to engage. Part of the problem is that, whilst the OCD is debilitating it is also ‘comforting’ in that it endorses her fears (this is quite hard to explain) for instance, she will fear a school trip because people might be sick on the coach and she is away form us therefore she doesn’t want to go on the trip and so has no incentive to overcome the fear. She says that challenging her thoughts creates stronger intrusive thoughts and this voice has now taken on a ‘male persona’ and she feels threatened by it (she does acknowledge that this is her own mind as opposed to a delusion). It’s honestly like she’s in a coercive relationship with her own mind. We have now seen a private GP who has fast tracked a referral to a psychiatrist but need to manage in the mean time and am just not sure how to do that effectively and sensitively. Thanks for reading if you’re still with me!
ps: like the rubber band idea, will see if she’ll entertain it.

Nip in the bud website

Has she tried meditation ?
Some lovely gentle meditation guides on Youtube.
We tend to latch on to certain thoughts, and put way too much importance on them, whilst allowing others to merely come and go.
I find Mooji on Youtube very good for explaining the thought process, and emptying the mind. His voice alone is very calming, l used to listen to him with headphones on in bed and he became like an old friend. It worked for me, l am now so much more aware and mindful of my way of thinking, which has led to a calmer state of mind.

Have a look at these books - very good and could be helpful whilst waiting for CAMHS (which is usually a long time).

OCD Tools to help you fight back, a cbt workbook for young people - on Amazon

Also the website OCD UK org for info

Challenging intrusive thoughts not going to be helpful as just adds to rumination.

Completely understand. We've tried absolutely everything, with our ds being mostly very open to trying out new ideas, but it only seems to paper over the issue.

Hopefully, in your dd case, medication will give her some relief.

Thank you all. I’m interested to understand how challenging the thoughts leads to more rumination because instinctively that’s what we’ve been encouraging and so has the counsellor. It’s worrying to think we’ve been taking the wrong approach. It’s so difficult to know how far to push it given she is also a teenager and therefore prone to only doing as she pleases. This is a bloody minefield

Gold standard intervention is to have ERP (exposure response prevention) therapy. Which is a form of CBT, but not the type of CBT that involves challenging thoughts as such, more learning to sit with them and not respond.

I find challenging thoughts mostly* not helpful because it can mean you spend more time focusing on the unhelpful thoughts. Often intrusive thoughts aren’t that logical or reasonable and the person having them does know this eg, I know that logically by switching on the light switch 15 times it’s not going to prevent y from happening. With the more intrusive thought OCD type OCD (where you may not see observable behaviours it’s all in the mind) people will go over and over in their head looking for evidence they didn’t do something bad for example, but even if they find a whole raft of concrete evidence to support this, the feeling something is wrong is so strong it doesn’t shift.

Also rationalising a fear isn’t always helpful, eg fear of flying, you can tell yourself it’s the safest form of travel, backed up by stats, yet that doesn’t stop the fear and refusal to get on a plane. Yet you can willingly be fine in a car despite knowing it’s much higher risk. Anxiety is a real £&@(! - doesn’t always listen to reason.

*im sure there are some exceptions, but speaking generally.

Quite possibly having explained myself well. Have a look at the OCD UK website and I really recommend those books.

I think challenging the thoughts is to be encouraged because you have to expose one’s self to the uncomfortableness of it to learn that it’s in your mind and not ‘real’ if that makes sense? I think my counsellor called it something like ‘magical thinking’ ie my thoughts whilst weird and downright distressing at times aren’t real, and my thinking about murdering someone doesn’t mean that I’m going to pick up a knife and do it, it’s just a weird little thought along the lines that everyone has.

A big but though, is that I was late 20’s when I was diagnosed and treated, so I have zero idea of how cbt would work for a teenager.

Please don’t forget to seek support for yourself if you need it, I can imagine it must be extremely tough for you 💐

Yes, you have to face the difficult thoughts, rather than avoid them. But not argue with them iyswim.

I'm going to sound like a mumsnet cliche, but longterm anxiety, OCD, school being a trigger, everything falling apart with the transition to secondary school...has she ever been assessed for ASD?

https://www.newharbinger.com/9781684035366/

This book is very good, especially in relation to the idea of not getting sucked into arguing with the thoughts.

I'm sorry things are so tough.

How is her eating sleeping and health otherwise.

This was my first thought. I always think that debilitating anxiety in a teenage girl means you need to think about undiagnosed autism. Also, there is now a school of thought which says CBT doesn’t work for autistic brains at all.

DD3 is similar. 14, falling apart, on the ASD waiting list but no sign of assessment. Can't go to school because people breathe there 😞

My Dd now 17’s OCD included 3.5 hour bedtime routine at its worst. She now has it about 95% under control and has made a really good recovery. We went private and psychiatrist prescribed Sertraline to reduce the anxiety and then CBT. I think what made the most difference was that she came to me asking for help and worked really hard on the CBT.

My DS was 11 when he developed terrible OCD. Intrusive thoughts, religious rituals, stooped eating, and would just lie on the sofa in tears all day. We were fast tracked to the mental health team due to the nature of intrusive thoughts he was having and received CBT. The Clinical Psychologist spotted signs of ASD and made a referral to CAMHS. Alongside his CAMHS assessment for ASD the MH practitioner offered another round of CBT which helped massively. I think the difference being he clicked with her and not so much with the Clinical Psychologist. We worked through some OCD and Anxiety books that were recommended, and she described the intrusive thoughts as 'hot thoughts' and not to fight them, but to let them enter his mind just like all good and bad thoughts and allow them to leave on their own accord. With rituals etc she did challenge each one and it made him realise that nothing bad would happen if he didn't eg say his prayers for 1.5 hours every night. Lots of distraction recommended, funny films and lots of positivity in the house (his OCD triggers when he is extremely anxious) and meditation also important. They recommended an app called Smiling Minds.

Some small scale OCD remains but it was decided it's likely linked to his Autism and sensory issues. Having said that, a lot of it has faded over the past year I'd say. I'm so grateful to that practitioner as she went above and beyond for DS and I really hope your DD finds the right person to support her as it makes such a difference.

Some great advice here and I'm sure you've also tried a lot of things...
But on top of all that could you try some alternative things that seem less confrontational to her? It sounds like she is shutting down when asked directly about the issues she's struggling with.. might be an idea to try general things to engage with such as yoga, meditation and mindfulness... things that anyone might do so don't make her feel confronted about her ocd.
When I was struggling with panic disorder I found the youtube videos by 'the anxiety guy" really helpful. He comes from the angle of health anxiety but even though that's not exactly what I had I found him so helpful. There's daily positive affirmations and breathing exercises to do.
I know that sounds a bit woo but I did find it incredibly helpful... and it's all very calm, positive and non confrontational... something she could do alone in her room to start the day with no pressure and no one judging her.
You could find meditation and yoga videos for her to watch in her own time.
Sometimes cbt, although massively helpful in adults and kids who can engage with it, can be a bit much for some people.. especially children