ocd support thread

[wickerman]

Hello. I know there are quite a few parents of ocd sufferers on mumsnet, and I wondered whether anyone else would be interested in a support thread?

I have 2 dds, the older of whom (13) has quite bad ocd. She's just hitting a new low point now after about 6 months of remission, despite being on 100mg sertraline, and we had a review at CAMHS today in which I suddenly understood what the long term implications of this disease might be. (I quickly pushed those thoughts aside, as they are too bleak). We were told that no more CBT was available for her for the forseeable future - she has had a staggering 6! sessions - and that now we had to deal with the systematic challenging of all her rituals ourselves.

I feel like I need to martial my resources/gird my loins/screw my courage etc - and I think that probably the idea of being able to talk to others in a similar position might be a mutually good thing.

For the record, dd has had dx for the past 4 years, during which time she has had two very severe bouts of ocd, and a couple of less severe ones.

I guess some of the support would be similar across any sn kids - the difficulties of holding down a career, of paying equal mind to other children, of introducing a new partner - but some of them would be specific to the strange and specific world of OCD.
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Bumping this for the morning crowd. I know there are loads of parents of ocd kids on mn - is there already a support thread I've missed?

Hi wickerman, yes I would be interested in this. DS has ASD and ADHD diagnoses but is waiting to be seen by camhs for ocd behaviours among other problems. We have noticed these behaviours escalate at times of greater stress. Have you seen a similar pattern with your dd's severe bouts?

When ds had cbt ( a year ago after a year's wait) he had a cognitive assessment followed by 10 weekly sessions. We were told 10 was the norm. Afterwards told that was our lot as we had been given the tools to cope now. which is fine except the dynamic is a lot different when there is a third party facilitator in the room so we have actually found it difficult to reproduce on our own with an angry or upset child.

link here to the NICE guidelines on treatment for OCD in children:
www.nice.org.uk/guidance/index.jsp?action=download&o=29952
in fact I couldn't get it to open - not sure if that was down to ancient computer or fault with the link. See how you get on.

Yes. Definitely interested. My son is 11. Aspie with OCD diagnosed age 9. Takes Prozac (weeny dose) but had just been referred for a second opinion by his lovely CAMHS psychiatrist who's tried Sertraline, one beginning with 'R' which had dreadful side effects and now.....Prozac with little effect.

They've also discontinued CBT. He's unable to retain and apply what he does in the sessions so well.

Hi definitely interested here too. My Ds is 15. He has had OCD since he was about 9. Diagnosed with AS at 10 because OCD was not responding to usual treatment. His OCD has been severe or very severe for nearly all of that time. 2 years ago it became so severe that he had to be admitted to the Maudsley in London where there is the national specialist OCD clinic. He was there for 8 months and made a lot of progress. In the last six months things have started to go down hill again and we are now waiting for another admission before it becomes as bad again. He finds it very difficult to access CBT due to his AS and at the Maudsley they focused on the behavioural bit. As he hasn't been able to work with the psychologist at all recently, I meet with her regularly to update her and for advice. I am shocked that you have only been offered 6 sessions OP that's nowhere near enough IMO.

Hello. Wow that's a high incidence of AS and OCD together, is that a known correlation? I know there's a link between ADD and OCD.
I can't imagine what that must be like - must make it extremely hard to access the cbt.
We were only offered 6 sessions this time - she had about 25 sessions - most of which we paid for - in her first bout, as it was taking up 24/7 and affecting her sleeping, eating, toileting, etc.
Yes clear correlation between stress and flare-ups.
I want my dd to have an independent, fulfilled, socially successful life. My ability to believe in this ebbs and flows depending on the severity of her symptoms. I hate how locked-in it makes her. I feel as if I lose her.

My feeling exactly! When we last saw CAMHS, I told them "he's disappearing again" because all of the things that make him ds were being put away, in order to make room for the constant obsessive, intrusive thoughts. The house could have collapsed and ds would stand there, doing his ritual compulsions, before he'd think to escape/run to safety!

Autism and OCD are known CO-MORBID conditions. Bedfellows of Tourette's Syndrome, too. Sorry !

Another one with DS dx'd Aspie and OCD.

Yeah, dd has tourettic symptoms as well, which get her into shit at school, but is not autistic spectrum-y at all. I've been told by one psych that there's also co-morbidity with ADD and bipolar, both of which run rampant in my family.

My mantra, for some time, has been: Jesse Eisenberg, Jesse Eisenberg, Jesse Eisenberg. He's the only fully functioning, creative, and successful ocd person I know. I don't believe that Beckham is REALLY ocd - I think he's ocd in the way that people who do not have it refer to themselves when they like a tidy house.

OCD is like the ovarian cancer of mental illness - it doesn't get as much press as other illnesses, is not as "hip" as some other mental disorders, and doesn't have wealthy charities associated with it. I don't know how many children are suffering from OCD or whether it's one of those illnesses that is, either really, or because of increased dx, on the up in our super stressy, anxiety making era.

Hopefully this thread can at least help us share information, support and vent frustration.

Good point wickerman. I agree, about your Beckham point. There are people who cannot perform the most basic tasks, such as washing, dressing, leaving the house because their rituals take up such a massive part of the day.

When my son was really really bad, we couldn't do any of the basic "ordinary" stuff because he HAD to devote his energy to his compulsions. Wanting things in order/tidy/clean ......is not OCD, as I experience it, through my son.

Hi, yes would be interested. There is severe OCD in my family so I know how disabling it can be. My four year old DS has some red flags for it and we are under CAMHS. He's not autistic, a bit quirky, but is highy sociable when he is not anxious.

There is a successful film director with OCD of the proper sort I think. He has phobias and can't go on planes. Sorry can't remember his name.

But yet, it is a hidden illness mainly.

IME people with OCD are not that clean or tidy!

Is it Lars von Trier? I know he can't go on planes.

I'm a single parent. My exh does take the girls on alternate weekends when he's not away working, but the bulk of the care goes to me. I'm also trying to hold down a fulltime job - freelance - and pretty flexible but nonetheless it's difficult with a child with ocd (and my other one has another health problem, but that's another story).

A while ago a poster on here suggested that it may be possible to get some kind of extra benefit to cover the loss of income caused by caring for someone with severe bouts of ocd. I've always not wanted to do this as it feels like an admission of defeat, but I'm just wondering whether I should reconsider. Particularly as, if I need to work when she's in the middle of a severe episiode of OCD, I doubt I could use my usual childminder. I mean, who the hell could you get to look after them? Would it have to be like a psych nurse, or what?

What do you do?

omg

list of famous ocd people quite innaresting

Bassingtonffrench, my son's meticulously tidy......drives me bananas! They're ALL different though, aren't they?

I've noticed him opening and closing doors again..... Using his chin and nose. He went through a time of flushing the loo, with his shoe'd foot. Nearly broke his neck on a couple of occasions. He'd make a good contortionist act . Oh, and it breaks my heart to watch him.

But then, sometimes he comes out with stuff, like last week at a dental checkup, where the dentist put down his blowy thing and shook his head smiling cause ds had made an observation so clever, so "out there" that we all just smiled at each other. And then I think deep down, under all the HF asd and the OCD, is a little person with a brain that runs rings around the lot of us!

Wickerman. You sound amazing to me. I know when I was a single parent, my gp referred me to social services special needs team for some assessment with regard to support. We got direct payments which would allow you to fund a pa to "assist/look after" your child, for a number of hours per week. Might be worth looking into.

Do you receive WTC's? I now get Carers Allowance because I could demonstrate that ds requires care significantly above and beyond that which would be deemed reasonable, for a child of his age. That was when he was self harming and I was up day and night, watching him, like a hawk.

Oh and wickerman, your OCD list included Ian Puleston-Davies. An actor/director who wrote the fabulous "Dirty Filthy Love". It has Shirley Henderson and Michael Sheen in it. It follows a man with OCD and I remember seeing it, years ago and thinking it sad yet very very funny, in places.

Of course now, it's not so funny..... As I can see my ds being there in future, as an adult. It's educational viewing for any who might think OCD is about people needing to wash their hands !

yes it was Lars von Trier.

good list, but I'm skeptical about it. Cameron Diaz? I think people in high profile positions can end up with stress related mental health problems, like eating disorders, but that is a bit different from being born with a dodgy gene, which seems to be the case in my family.

wickerman, don't know what I'd do regarding work. Does your daughter have a view about it?

Yeh bassington I know what you mean, and some of the list entries are a bit like "x was thought to maybe have had something that might have resembled ocd" - the darwin one is very funny but I think it's just good to have a list of people who've overcome, otherwise that statistic from the WHO about it being in the top 10 debilitating illnesses can get a person down.

Eliza thanks, I'll have a look and see if I can get any top ups on my WFTC.

My daughter calls her ocd "fiona" and has drawn several pictures of her. Externalising her to this extent has been v helpful. But

Fiona is being particularly vicious and getting right into her language at the moment, making her lie, answer questions 5 minutes after they've been asked, shout out random things, answer questions at school with deliberately wrong answers. She is way malicious at the moment.

Oh and I LOVED dirtyfilthylove and it was what helped me recognise that dd had ocd when she first showed symptoms.

michael sheen is incredible.

Michael Sheen in that role..... GENIUS!!

I have just stumbled across this thread and yes, I would most definitely like a support thread for those of us with OCD children. My son is 12 and is mainly confined to the house thanks to his high levels of anxiety. He can no longer go to school, so I have been home educating him for the last few months. He will be getting help from the LEA in the form of online teaching soon.

It has been a rocky, rocky road so far. DS has a diagnosis of Tourettes, severe OCD, social anxiety and shows some ASD traits. He has had CBT, but it didn't help much and he is unable to benefit from it at the moment because he's too ill. He is on Prozac and his dose was recently doubled because it wasn't helping his OCD at all. The psychiatrist at CAMHS said you usually need a high dose of medication to reduce the OCD.

DS's rituals are sometimes very disturbing. He doesn't discuss them, so we have to be like detectives, looking out for them. It is hard to live with, but I always think how much harder it must be for him. I fear for his future.

I have 15yr old dd with ocd, diagnosed when she was 11.
Has a fear of food preparation, people being sick, and has a focus on my son ( who has never been ill in his life)
She refuses to go to therapy now...is resistant, although cbt helped when she was 12, as she gelled with the doctor.
School are amazing, and she has a special toom and staff she can go to if it all becomes too much.
It is definitely worse when she is stressed ie at exam time. Lastweek she ran away and we had to get the police . She also self harms. It gets worse at period time...she finds the whole concept of periods hard.

I have it, but try not to let it impact on daily life. It gets worse when dd is having a bad time.

Hi all

I have a 13 year old daughter with OCD. diagnosed 2 years ago and spent 8 months in hospital. She has made huge progress but does not have contamination issues. Hers is about doing things 'perfectly' which led to rituals lasting up to 18 hours. I am starting a support group in central Manchester and will give details if anyone is in the north west and interested I came across this thread by accident but am keen to continue the thread. I have a lot more to say but have run out of time. ps have met Ian pulseton Davies he's great and was very kind to my daughter. Took her round The Corrie set!!