Ds ocd is taking over our lives

[3teens2cats]

At my wits end with ds18 and his ocd. He is on the waiting list high intensity cbt but in the meantime it's impacting every area of his life and now ours too. His obsessions and routines are around hygiene, food and sleep. They snuck up on him because at first we thought it was great he was wanting to take care of himself a bit more but now he eats a totally separate diet to us which is exactly the same goods every day and they have to be weighed do it's exactly the right amount. His bathroom routines take literally hours because had to wash his hands for 2 whole minutes in-between touching anything. He has to get exactly 8 hrs sleep and times his whole day around what time he must go to bed, only because of his food and hygiene routines he frequently goes to bed late which means he gets up late, misses college and starts the day on the back foot. He won't eat outside of the house so that causes no end of problems because he then has to eat his whole days food, which remember is very precise, in the evening. It's exhausting being around him, he barely leaves the house and he's missing out on all the usual stuff an 18 yr old should be doing. I am looking into private therapy. I k know we are enabling him but he's barely functioning and I am terrified of how he will be if we refuse to buy his specific foods or make sure we are finished in the bathroom stupidly early. I just don't know what to do.

Have you looked at OCD UK? It's a website that might be useful. He is likely to need ERP (exposure response prevention) as well as CBT. This is in the Nice guidelines. An SSRI may also help. If it's a long wait a private psychologist would be great, if you are able to afford it. It's a horrible affliction and I feel for you all.

If I keep calm and talk gently that helps to keep him calm. He still has to do his full routine but less likely to have to start again. But in reality life has time pressure

My son is 17, has ASD and he developed OCD following a mental health breakdown when he was in year 11. Its been the worst time but he is now 2 years and finally coming out the other side. He was self harming and threatening us too so was on medication- Risperidone. He also takes sertraline for anxiety. What helped was time and the Risperidone definitely helped to calm him and take the edge off. When he was starting to get better the OCD wasn't as severe. He still has some OCD issues but we are now able to help him to overcome the controlling behaviour slowly. He was at risk of being sectioned, and we had help from a couple of NHS MH teams and he valued being able to talk to them. He is still under camhs as he is not 18 yet and started cbt earlier this year but i don't have much faith in this helping him because of his ASD as well.
Your son sounds quite unwell and if not already speaking to a Dr/Psychiatrist I think that needs to be your first step. CBT will only help so much, he probably needs medication first before he is able to access therapy.

This is a fab book for parents showing you what you can pro actively doing whilst waiting for cbt

www.amazon.co.uk/Breaking-Free-Child-Anxiety-Scientifically/dp/0190883529/ref=asc_df_0190883529/?tag=googshopuk-21&linkCode=df0&hvadid=697181752995&hvpos=&hvnetw=g&hvrand=1061776603163740263&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=1006522&hvtargid=pla-920544556788&psc=1&mcid=51da4b79180f35bf8dcec0ebfa2b3319&th=1&psc=1&gad_source=1

How ableist is your reply. Would you call a ramp for a wheelchair user enabling in a negative way?
He has a health condition. Just because you think it's not doesn't make it any less real.

I don’t think that’s a fair comparison.

Also, I suspect what ‘enabling’ means in the context of ocd is allowing harmful/unhelpful behaviours to carry on completely unchecked.

Reassurance is not recommended for OCD. You can google this and read up on it, eg;

www.ocdtypes.com/reassurance.php#:~:text=Like%20all%20types%20of%20OCD,makes%20them%20come%20back%20stronger.

She isn’t reassuring him OR enabling him. He is trapped in a vicious cycle and his behaviour is also impacting his family. What is she supposed to do? Physically restrain him?

So we went out for lunch today. Dh told him he would be able to have a steak. I had to then tell him we couldn't guarantee this and that, as uncomfortable as it was he would have to wait until we got there to see but I knew there would be Sunday carvery. When we got there he wouldn't get out the car and was visibly upset. So we left him in the car and I went back out to him once we were settled at the table. I got him inside with gentle reassurance that it would be OK. And it was OK. He wouldn't go up to get his carvery but he did eat a plate of beef and vegetables. He asked me to estimate how much each might have weighed and I tried to be as vague as possible. This is what I find hard. Advice I have read says I should just reply with "oh I don't know " but instinct tells me to take a guess to placate him. I have to really stop myself getting sucked in. I have to also tell myself that I can't fix him. Even if I say the right things I can't fix this he needs professional help which we are trying to organise for him.

Thats positive that he did go, although he sounds very anxious about the whole experience. Its very hard not to say what they want to hear, i still do it and I know it just reinforces the OCD but its so hard sometimes to deflect and move the conversation on. Just praise him for doing so well and going out to eat and how good that was. I have commented before but medication was the trigger for my son getting better, he was too unwell to access therapy initially. Have you taken him to the GP to explain the situation and can you get any help with medication for your son? It really does make a big difference in helping with the anxiety.

As a relative of an OCD sufferer, of course you tolerate their condition. My DB lived with us and his OCD was hell for us. In lockdown he wouldn’t let us leave the house, even to go into the garden, or open a window. He wouldn’t prepare his own food because he feared it would become contaminated so I’d have to make all his food while he watched me like a hawk and would force me to wash my hands every time I touched a drawer handle, tap, knife etc. It made me ill, and was just forcing me into his own illness. Of course I was compassionate, but enabling the unhealthy behaviours are the worst thing a relative can do, and totally contradicts what a therapist would recommend.

hi @3teens2cats it’s very true what people say about giving reassurance etc but very hard to not do this when you’ve had no support from a therapist as yet. Don’t beat yourself up.
We learned about all of this via our son’s therapist, we also had to force exposure to the things that increased his anxiety etc. but we did this with support from his counsellor.

You will get there but I feel for you all. It’s the hardest thing we’ve ever done.
Good luck.

This is so tough OP. As pp have said, ERP and medication are the gold standard for OCD treatment but I noticed a pp said go for in person treatment rather than online - just wanted to weigh in on that point as you might struggle to find someone privately who specialises in ERP for OCD and is willing to work with this level of severity outside the NHS. So I would consider online therapy (via video call) also as that will give you a much wider range of choice of therapist. Online could even get better outcomes as the therapist will be beamed right into the environment where all the rituals are happening, which helps with the exposure work

SSRI and intensive therapy privately. I speak as someone who was stuck in an OCD cycle for years and finally free.
the SSRI took some adjusting. I went up to a very high dose then dropped down very gradually over a few years. That took the edge off enough for me to break the cycle with therapy. I am on a low maintenance dose now and live a normal life. Your son does not have to put up with this.
Tell him to push through with the initial SSRI side effects as they are unpleasant but short lived.

I was (am) a long time sufferer of OCD, from about 12 to 32, mainly because I was unaware that was what I was dealing with, since I had a "pure o" type, where the compulsions were not so obvious and outward as cleaning/washing. Instead there was a lot of internalised mental rituals and checking like processes.

What finally let me beat it was:

• Finding a good support group (I used OCD Action's online groups). This was more about hearing from other people going through the same thing and feeling less alone to me
• Saving up to pay out of pocket for someone who specialised in ERP therapy
• Finally being sick enough of it to save up and join a support group

The last bit is the step that gets forgetten about often. OCD will really do everything it can to perpetuate itself and convince you that your compulsions are the only thing that can give you certainty and quell the torturous mental/emotional state you are forced into against your will. It took me two decades to get to that point by myself without help and just bottling it up. But someone who isn't ready to get better and isn't sick of their suffering yet will not be able to put in the hard effort it takes to get better. Because it is hard work. Absolutely worth it in every way, but brutal and exhausting.

On "enabling": this is poor word choice, but it is not completely wrong. The way to beat OCD is to stop engaging in compulsions: checking, washing, reassurace-seeking. Even better is to do the opposite of what the OCD tells you. Any serious resource will tell you this, instead of saying to give in and find ways to schedule or keep compulsions "controlled" as this is not possible. But, at the same time, you can't cold turkey it. You will fail if you simply try to stop everything. ERP therapy works by starting with very low-level panic-inducing scenarios and just letting yourself be uncomfortable, but then learning to trust the discomfort will leave on its own without compulsions. Very distressing and horrible for the first times you do it, which is why you need to start small and work up. This is also why it is much easier with a therapist who can monitor you and keep it at a workable intensity, as it can be easy to overdo it and end up in a one step forward but two steps back situation.

Here is a link for OCD action, they also have support groups for parents of sufferers, which I have not attended, but given how good their other support groups were and how serious they are about training the moderators, I wouldn't hestitate to reccomend them:
https://ocdaction.org.uk/online-support-groups/

I would reccomend you try to get your son to join one and listen. There is no need to talk. When they call on you, you can refuse and say you would rather listen. Any more advice on what to do, is not something you should be taking from online, but from professionals or OCD interest-groups who are up to date on the most effective treatment.

I will end with this though: despite OCD being in the WHO's top 10 most debilitating illnesses, it is very treatable. It actually remains one of the mental-health conditions we are most able to treat through ERP therapy. So there is hope, and you should keep this hope in mind.

On in-person vs online. I was treated online, though by someone local to me (thanks Covid!). I didn't feel that the treatment taking place online hindered my progress. I'd think most practicioners are quite used to online now. Many severe OCD sufferers would struggle to get out the house for treatment that was not online.

Please consider if it could be part of PANS PANDAS and the PP UK Facebook support group has many parents with lots of experience with OCD so would recommend joining anyway even if you are not sure if it might have connection with infection history.

100% agree. It's your son, OF COURSE it affects you. Beggars belief that people on here can't understand that!

Wish you and your son all the best OP 💐

Update. It's been a month since my first post so I thought I would update in case it's ever useful for anyone else.
We contacted gp who was very helpful and gave us realistic advice. Basically said nhs services will be 6 month wait so to go private if we have the means. He prescribed flouroxitine too. Ds won't take it because he read about side effects on the Internet but we found a private therapist who he was able to start talking to straight away. It's done by video call even though she is only based down the road. So far there have been no real changes to his behaviour but he understands what's going on much more and understands how the treatment works and what steps he needs to take. And he is taking baby steps. College have been fantastic. We had a meeting with them and they have agreed some really useful adjustments for him. So although his ocd behaviour is still a massive problem, we feel there is a pathway for him now. We are so fortunate to be able to pay for private treatment. As for 'enabling' we don't look at it like that now. I blamed myself a lot but it's not helpful. It's not his fault or ours. My job now is to support him to do what the therapist is telling him. Thank you who was so supportive

Something that helped for me is that all side-effects to SSRI medication is reversible. Your GP should have prescribed a low tester dose, which can still be helpful, but your DS should be able to discontinue if they are not finding it useful, though it is often advised to try and take it for at least a month.

Personally, I felt medication put me on a more even keel and helped me get more out of therapy so I could come off it later

It sounds like you're really struggling, and I can imagine how exhausting and overwhelming it must be for all of you right now. It's clear you're trying your best, and it’s not easy watching someone you love go through something like this. OCD can really take a toll on the whole family, and it’s natural to feel unsure about how to handle things without making it worse for him or for yourselves.
Looking into private therapy is a great step, and while waiting for CBT, maybe a therapist could give you some guidance on how to support him without enabling those routines. It’s such a tough balance, especially when you’re scared of how he'll react if things change too quickly. Just remember, you’re doing everything you can, and sometimes it’s about small steps. Don’t be too hard on yourself this is a huge challenge, but getting help for him and yourselves will make a difference. Reach out for support wherever you can, even if it’s just to talk to someone who understands what you’re going through.

I lived with a friend who had severe OCD at university. It was a really difficult experience for both of us.

I mainly tried to strike a balance between explaining why things wouldn't be problematically contaminated, allowing her to wash stuff and just dealing with the aftermath.

She once got to the point where she was refusing to put sheets on her bed because she felt that they had all been contaminated and that was one where actually she just had to put up with the uncertainty and horror. I can still remember her crying and being upset but ultimately she did let me help her make the bed and then sleep in it, rather than on bare sheets.

I don't know that the above helps, I guess just saying that while I was prepared to deal with some level of allowing the compulsions, actually I think for her own sake it was best when I didn't do that because that was what made her life broader rather than narrower.

I'm glad your son is getting some help. I'd really recommend that he takes some medication if you can manage it. It seemed to help my friend an awful lot.