SaraJane

Hi Paul, Thank you for writing an update here - I have been thinking of your posts a bit and hoped things were improving for you. It sounds like you’ve made a fab dint into dealing with things with the new approach to medication and I am glad to hear it is helping your son - hopefully over time the medication will become even more effective. Hopefully too it will lay some foundations that will make it easier to work out some of the other issues with your son and apply other strategies like CBT. I’m glad school is going ok - it’s good your son is there during the day so you and your family get chance of some respite and there is hopefully no threat of him being expelled. If your son is more settled at school for now it maybe helpful to see if he can go to clubs or other activities to extend the time you get - this may also be an option if it means your son will only be home when you are so your wife and daughter feel safer. Keep up the good work.

I’ve replied to the other thread Paul and read here after. It’s good to know you and your wife support each other through this. I’m very worried about you both and especially your 4 year old. It does sound like your son may need to be removed from the home for a while for all your safety. I’m not sure how that’s achieved at this stage but it’s possibly worth finding out about.

It sounds very stressful and frightening Paul. I can understand your frustration with family and friends - I guess they’re trying to be helpful but it’s impossible for anyone to fully understand unless, as you say, they walk in your shoes. I’m wondering what the police could do if they were called and what powers, if any, they have. There maybe someone here who has some insight into that. Did you say your son goes to school? How are they finding things? Do you have other children at home? As your son’s behaviour is dangerous it maybe necessary to look at a way of removing your son from the home for a while for the other children’s protection. This is not a tenable situation as I know you must be aware of. It’s an agonising choice (I’ve had to do this so I know a little) but at your son’s age he’s big enough to do real harm - as you say, potentially fatal harm. It would give you all some space to work out where to go from here. Hope you see some light at the end of the tunnel soon. Sara

Thank you for sharing this - I’ve found indifference increasingly helpful too but hadn’t recognised it as that until I read your post.

Hi Paul, I’ve been reading some of your posts over the last day or so. It sounds like you and your family are going through quite a lot at the moment. I’ve been a carer to a now adult with Autism for 18 years and I have a daughter with OCD (as well as being an ocd sufferer myself). I’m not medically qualified at all here just sharing what your posts made me think of which is something I read on the National Autistic Society website once about something called PDA (hope it’s ok with OCD UK to refer to another organisation here). PDA stands for Pathological Demand Avoidance, (the name doesn’t make any sense to me) and the description suggests that it is a way anxiety is expressed in people who are on the spectrum. I don’t know if this is your situation but it maybe worth a look. The adult I care for with Autism forgets medication as part of her conditions and needs checking on everyday to ensure she’s had them. I think for now, even around possible meltdowns, you may need to keep and administer the meds so you’re sure they’re being taken especially as it seems they maybe an essential link in the chain to helping your son get better. I know the meltdowns can be tough, and even this much is exhausting, but I think getting the meds taken, even if nothing else is achieved at this stage, is a massive step forward and it could help enable later steps. Hoping for the best for you all.

This is a great idea. I’m a long-term sufferer of OCD (often in different ways to my daughter) and a parent of a child (since the age of 4) exhibiting ocd symptoms. We’ve been under CAMHs with our youngest for some time. We’ve done a lot of graft at home applying what I have learnt from my own therapy (CBT) with our daughter and her ocd has transformed enough for CAMHs (alongside other reasons) to currently refuse to formally diagnose her. We’ve been blessed with excellent school support with teachers willing to read OCD UK’s Jolly and Grump and put a school plan in place for her. I’ve felt very lucky that my own need for therapy (high intensity with IAPT) gave us a toolbox we could use at home or we’d have been at a loss. In the end it is the parents who are mostly the ones on the frontline in dealing with a child’s ocd and I think training them in how to use CBT for ocd is the best approach - the parent is then the available therapist. The parent is also the common link in the chain - the one that sees the child’s teacher, GP, CAMHs, etc., and with that training they can advise the school and so on. Maybe an online course for parents where they can learn the basics and an interactive forum where any creases in applying that new knowledge could be asked about.

Well done Scorpio. You've taken a massive step talking to the doctor. Two weeks is a good amount of time to start taking the medication in and hopefully you will be starting to feel some benefit from the meds by then. Has the GP suggested CBT at all?

Glad you posted an update Scorpio and I hope that this is a turning point for you in getting some support. I was given meds initially and then referred for other support. Do you think you will be able to take meds if they suggest them? Sometimes they can make a big difference whilst all the other things such as counselling or CBT are put in place. It may also be helpful to look for additional sources of support (as you are doing posting here) and things that may help as you go through this. I used to call The Samaritans at my lowest just to talk to someone but I also found writing helpful. I still write now and one of the main things I do is brainstorm things that may help in a given situation because it can be hard to think of those things again on other tough days. Please keep posting updates and I hope the GP appointment works out to provide the best support for you.

Been thinking about this quite a bit recently and thought it might be helpful if we share the things that help to keep us going in the battle against the ocd and the depression that can accompany it - especially on those tougher days. For myself a main inspiration was watching a 6 year old fight back at ocd and win. On a really tough day a walk outdoors in woodlands can make a massive difference to my ability to cope even if I am very low and having a very bad day. So what helps us, inspires us and gives us that extra something that enables us to keep going? Sara

I know this must be very frightening for you. I've been there - had severe post-natal depression as well as the ocd as a single-parent requiring attendance at a mental health day hospital. I was told I had to stop breast feeding to take my meds or I would be hospitalised as an in-patient but in all of that no-one ever took a single step towards taking my two children away. I got a lot of much needed support though, counselling and a place to go to (the day hospital) with my baby until I was well enough to leave. The health visitor was fantastic. It really does seem very scary at the time but hopefully out of this you will get the support you need. Really glad you are posting here and if you can please post an update.

Thank you all for your encouragement and thoughts - it really helps to know that this is a usual way for ocd to operate and that there is still hope for beating it despite the way ocd changes. Snowbear - shape-changer is a fabulous way to describe it and it will help to have a better way to explain it when I see my therapist this week. Sara

Wow - some amazing achievements here. Well done to all. I've been more sociable and now we've moved house I've started going out to the shops and into the community without having my hubby by my side. I managed to get a train to stay with a friend and we got to the York conference. Mostly though it is the little achievements everyday that make the biggest difference - each minute more where a compulsion is not done and it all adds up or sitting on a public loo seat only to find it wet with some unknown something and not applying a mass of anti-bac hand gel to it. I feel positive about this year ahead and plan to keep moving on taking more and more steps against this illness and my other anxieties. Sara

Hi there, I've been having High Intensity CBT for a while now and have a good therapist. I do plan to ask him about this too. I have quite a few different types of ocd which can make tackling them quite a challenge. For some time now I've become aware that ocd seems to change shape as you tackle it. I'm finding if I am succeeding at beating it in one way it seems to tweak itself and present itself slightly differently so I have to constantly adapt myself to fighting it. It's a bit like a manipulative person when they don't succeed at conquering you one way they re-word things and try something else until you are back under their control. I am finding this frustrating because it feels like the goal posts keep moving and almost as if the ocd has some sentience of its own. It really does seem like the ocd is self-aware and is doing everything it can to stay alive. Does anyone have any experience of this? If I continue with the CBT (which I def plan to do and I am determined to keep fighting the ocd) does this constant tweaking of the ocd eventually stop or settle down? I am looking out for covert compulsions and am trying to make sure that I am aware of any new compulsions that may come in as I ditch the older ones but am finding the ocd still changes its presentation as I fight it. I'd appreciate any thoughts or experience anyone can share about this. Thank you, Sara

Scorpio - I am so sorry to hear how tough it has been and about your Mum. I think it is amazing that you are not avoiding things and you are fighting the ocd throughout all of this - that is fantastic and I want to encourage you that you are doing incredibly well in the face of so much. I hope your little one starts to sleep better soon so you can get more sleep. It may be worth seeking out some additional support too just to get a break or have an extra outlet if you can - I know that isn't always easy to find but it can help.

I've done this before with scrupulosity and it was really tough but it did make a massive difference and I would say if you can manage it then it is a good approach. I got to 3 years at one stage without performing my main compulsion - sadly I found I only needed to succumb once to it even after all that time and the cycle started again and I am currently having CBT. I think it would have been more beneficial if I had managed to go cold turkey with all of my compulsions rather than just the one because ocd will grab hold of whatever it can to grow back into dominance. I did have support through it though which made a massive difference especially at night so it is def worth looking at how you can get some support through those first few days/weeks of cold turkey. The initial part was worst and that lasted 3 weeks and that is when I needed the most support. I think there may be one advantage here to the gradual approach over cold turkey though (especially if done through CBT and with a therapist) which is that it gives you the skills and knowledge long term about how to prevent the ocd coming back - I suspect if I had combined the cold turkey with more knowledge of how to beat ocd through CBT then I would have had better skills in preventing the illness from growing back so much. I'd encourage you to read around ocd and CBT if you haven't already done so. I hope it goes well.