To ask if anyone has any experience of therapy that has worked for teenager with OCD?

[deaperatelyunhappyandscared]

My dd15 has OCD, it usually involves rituals that she has to go through when showering / bathing and getting dried / hair etc.
She also gets hyper fixated on various things to do with her health and her appearance.
In the last month or so, it’s become so extreme, that her shower rituals are taking hours. She knows in her head that this isn’t “normal”, but feels that she has no control over it.
She has an occupational therapist, but it’s so difficult to get her to engage with any help, it hasn’t really made a difference. She’s seeing a psychiatrist in a few weeks to discuss the possibility of medication.
It’s exhausting for her and me, I’m a single
parent with one income and it’s becoming a financial strain. Obviously her mental
health is my first priority, so I do everything I can to try and help.
Does anyone have any experience of therapy that has been successful in the treatment of this type of OCD? Or any books you would recommend?
I know we can’t continue like this, but I’m so stuck.

@deaperatelyunhappyandscared It can be a very long process, I really feel for you both. Being prepared with questions is a very good idea. I would definitely be asking about the need for further psychological therapy, with a therapist or psychologist - she needs an intensive course of CBT which is NICE recommended. Ideally with a Clinical Psychologist as it sounds as though there is a lot going here and an integrative approach would be helpful. Don’t feel afraid to ask questions and be assertive - it is absolutely your right as a parent.

@deaperatelyunhappyandscared It's most definitely worth a try. I'd only ever seen the dramatised versions of hypnosis on TV and I honestly thought it was a load of bollocks. It was a bit of a last resort to give it a go myself as I'd become really unwell both mentally and physically due to my OCD and was running out of options.
I had 3 sessions in total at the beginning of this year and I don't know how or why it worked, but I started to be able to think much more rationally as it took away so much of the anxiety that was preventing logic. It's nothing like the stuff you see on TV.

Thank you all so much. This has really helped me. I do really try and remain positive, but it’s getting harder the longer and worse it gets.

So sorry you’re going through this too, it’s hell.
Ds was diagnosed with OCD at age 6, it started with ritualistic hand licking and blew up into an irrational fear of germs leading to wearing gloves for a solid 18months! He is petrified of getting sick. He also performs routines and counting to avoid anything bad happening to anyone he loves.

When Covid happened, he had a severe breakdown as everything we and CAMHS had ever told him wouldn’t/was very unlikely to happen, did. People wearing gloves and masks and people dying allover. It was horrific. That’s when he started medication (fluoxetine) he was very young to be on it but it was either that or frankly, suicide.

We have had ups and downs over the years from being somewhat manageable to a living nightmare. We are currently in a living nightmare, ds is almost 15 now so this has been our lives for a long time and things are very bad right now. He’s taken a nosedive over the past 4-6months. We have had to up his medication and take a far firmer approach where he is monitored while washing as he is making his skin bleed from all the scrubbing. He is under strict time limits as he was showering for 2+hours at a time, several times a day. He cannot go to the toilet without showering afterwards.

Putting limits on washing has honestly been like taking heroin away from an addict but we cannot allow him to just wash and wash and wash. We’ve had to sit with him sobbing/screaming in a ball on the floor making sounds I never thought a child could make, it’s truly horrific.
He cannot be left alone as I do not trust him not to hurt himself. He is on a reduced school timetable. Things are bad right now. I do not work because frankly it is impossible.

He has had several rounds of CBT and although we have had such wonderful people helping, I don’t think it works (for ds) as he is so unwilling to even try or sit with the exposure for even 10 seconds without washing.

I truly believe he would be dead without us choosing to put him on medication when he was younger. When he first went in the meds, it was like it gave him some clarity to actually think clearly again and we made some progress and saw glimmers of our happy boy again.
He was also diagnosed as Autistic age 11.

Upping his medication recently is starting to show some hopeful signs of that clarity again and we wonder whether his puberty growth spurts meant the lower dose was not enough for his new size??? Maybe, I don’t know. I so hope we can make it through this phase soon, I am almost broken, I have struggled so much this time around. I have a younger disabled daughter too.

Sorry, I am waffling but I have never had anyone else who knows exactly what this is like.

I am interested to read about peoples experiences with hypnotherapy so will be following to read more.

CBT with ERP (exposure response prevention) is the only proven curative treatment for OCD. An SSRI combined with this will help it to work better but meds on their own are not enough.
Not all CBT therapists are any good. Hopefully she can see a psychologist as they ought to be better.

Yes so sorry OCD can be so terrible. As other posters have mentioned, I believe the NICE recommendation is for CBT (but needs to be with a fully trained therapist) plus medication in severe cases. I think the usual treatment is “exposure and response” therapy, where the person gradually faces their fears. Tbh, I found this terrifying and needed to take an SSRI to take the edge off the fear (my OCD was severe) then it was lots of hard work. But it sounds like your DC has great support from you which should really help. SSRIs can have bad side effects and be hard to come off, but it’s a case of balancing up the possible benefits. If you could possibly look into private, I really recommend OCD Excellence, an organisation where I think all the therapists have had OCD themselves so have a great understanding. Also worth having a look at the OCD Action and OCD UK websites for further info and support groups. Feel free to PM me. Good luck x

I’m so sorry to hear about your Ds, absolutely heartbreaking. It does sound very similar to the way my Ds is headed, her showers can be up to 3 hours long, her skin is red and sore, she sobs in the shower because she’s so tired and has so many other things surrounding the rituals (like changing her pyjamas and towels), that I’m constantly using the washer and dryer.
People tell me to stop her, but I’m on my
own and she’s a fully grown adult size (taller than me). Plus I’ve seen what happens when she can’t complete her rituals and it scares me. I think I need the guidance of a professional like you have had to be able to help her.
I have a job that I’ve cut down from full time to 20 hours to be able to be with her / supervise her, but it’s got so bad I’m currently taking time off and only living on ssp. I don’t know how much longer we can go on like this.

It sounds as though she is depressed as well as having OCD in which case the meds might help a lot. Fluoxetine is 1st line for under 18s. She would need to stick with it for at least 6-8 weeks to see full benefit and it will feel as though it's doing nothing or even worse for the first few weeks so you have to encourage her to stick with it.

Thank you so much, this is really helpful. I’m so glad I started this thread.

It was CBT plus clomipramine for me. Unfortunately, I put on a horrendous amount of weight. I believe that other drugs are now available.

Absolutely, we will follow to the letter. Sertraline and fluoxetine were mentioned, as was propanolol for the anxiety, but I’m not sure if they meant both SSRI and propanolol.
I was misdiagnosed for years until I had a thorough psychiatric assessment and was diagnosed with bipolar. This was about 7 years ago and I have never been so stable for so long thanks to the right medication. It took some perseverance but it was 100% worth it.

My DD has OCD, severe anxiety and agoraphobia. She’s been practically housebound for the past 2 years, she’s 20 now. It’s utterly heartbreaking to watch your child go through something like this, you all gave my sympathy.

DD has been on sertraline for years. She has a CPN and an OT. She has just finished with a psychologist as her 20 NHS sessions were up. I’m so frustrated with this as that’s it, she’s no better yet that’s it. We plan to find someone private in the New Year for her but it is so difficult as she really liked the psychologist she had so going to a new one will be hard for her and actually going there will be tricky. I’m thinking of online sessions.

I had rally terrible OCD at her age too. Only I was on my own at boarding school which I don’t recommend for the severely mentally ill!

Honestly mine was brutal but the book ‘Overcoming OCD’ by Professor David Veale; I read it over one weekend and I have to say it basically cured me. I would buy it today and read it tomorrow if I were you!

Wishing you all the best xxx

@deaperatelyunhappyandscared YES! Our washing pile is so extreme, ds will only wear clothes for a matter of hours and a new set is put on after each toilet visit, it is never ending!

It is so easy for people to say ‘oh just stop them!’ but they are not in the middle of this, it is absolutely not that simple.
I am married and DH is a huge help/support and when either of us loses our shit and just can’t take it anymore, we tag team and take over. I cannot imagine having to do this alone.
I have cried and begged ds to please try even just a little bit, I have screamed that I cannot do this anymore and he sobs too that ‘I can’t, I can’t do it mum!’ It’s absolutely heartbreaking. You cannot understand it unless you live it.

Please know you are doing amazingly and are not alone. I would seriously consider medication options just to allow your dd to begin to see the wood from the trees again.
Friendships have also been very difficult for ds and he has been horribly bullied through life but I have recently enrolled him in a local art class for teens and he’s enjoying it. He’s always loved to draw and although he said everyone just sits and draws in silence he actually enjoys the peace of it.
We’ve tried team sports or bigger group activities but it just never works, he can’t manage the social side of it.

Is there anything like that that your dd could try? Just even for an hour or two of escapism.

I hope you are doing ok 💐

I’m so sorry, how awful for your poor dd and you.
Pretty much the same here, dd won’t leave the house, but finds it really difficult to engage with professional help.
I really hope you find someone else that can help.

Thankyou, I’ve ordered tonight and it arrives on Tuesday!

It really does help to speak to other parents or people who have been through OCD.
Thank you for your kind words, I do feel less hopeless after reading everyone’s lovely responses.
Unfortunately I can’t get dd to do anything that involves any other people, we live a very restrictive life at the moment. Not for want of trying though, I keep trying suggestions and gentle persuasion. One day hopefully x

I'm a clinical psychologist (I work with adults rather than children) and I have found emdr to be particularly effective in treating OCD. X

There might be something you could do with diet to reduce the intensity. https://www.medicalnewstoday.com/articles/foods-to-cure-ocd#summary

If you start her on b12 be aware that methylated version may be necessary. Or not.

there are three different types.

I’m guessing it’s likely your daughter (and you) have the MTHFR gene.

When the methylation cycle is off, things go wrong in the brain.

Omega 3 is anti-inflammatory for the brain.

Vitamin D is also anti-inflammatory for the whole body.

I would see if you can get her to the GP for some blood tests. Or if nothing else, just to trial some of these and see if it helps.

I get our omega 3 from Bare Biology and methylated b12 from Solgar.

She may be low in iron/ferritin too. That doesn’t help either.

We eat liver once a week now to help with methylation. I know it’s a big ask. But we’ve all got the MTHFR gene so I feel it’s essential.

Yes I had this & health anxiety for about 5 years & it was ruining my life!! I went to therapy through the NHS & it 'cured' me!

@deaperatelyunhappyandscared I’m so glad to read that, sometimes just knowing someone understands and can relate can help so much.
I so hope for some improvement for you and your daughter soon. Medication really did give us somewhat of a life back, we’ve just had an awful relapse right now but I’m hoping we can get back to a decent place soon.

I hope you will soon be experiencing that same positive step in the right direction. Will be thinking of you both x

Yes, the most effective treatment is ERP, not straight CBT. However if it's autism as well it will also need to be specifically targeted to that. Medication can also be useful.

Yes to second that, CBT needs to be a certain kind for autistic people. Seems like regular CBT doesn’t work. Autistics too rational and it’s not effective so must be presented and taught differently.

Exposure therapy but they must also be on medication and at the right dosage otherwise it’s not going to work sadly. The best of luck.

I’m so sorry to hear about other DC suffering. My DD (15) always had anxieties round cleanliness, eg she couldn’t touch dirty laundry, but I think the pandemic made her a lot worse. She had some CBT through CAMHS almost 2 years ago, which might have been helpful except it was over before it really got going. It did lead to DD getting a (private) ASD diagnosis, and her symptoms weren’t so bad for a while. She is now in Year 11, and her OCD is bad atm: her hands bleed from the washing. And she can’t touch her schoolbooks at home because they’re dirty, which is a bit challenging.
We’ve just found a private therapist via the National Autistic Society directory, so I hope she is going to get ASD-friendly therapy. That might be a route to try for anyone with OCD and ASD.