Is ocd really that rare in children?

[Cake4tea]

My dc has been assessed to have ocd, severe after a very long assessment. They are under the child psychiatrist and he is lovely, the last appointment we had I was really surprised to hear that my dc was quite an unusual case and although they do have some children come to camhs with OCD it's quite rare. We talked about how there's an hereditary factor to it and it can also come on after an acute viral illness(pandas) He said may dc will be on meds for a number of years he thinks but ocd is successful with therapy AND meditation. I was just surprised to hear they don't have many children with it. I guess there are many children that don't have the help and don't come forward. It's been a hugely long wait to get a diagnosis.

How old are we talking about? DBro had it aged about 9-12ish - related to bereavement, gradually grew out of it thankfully (no psych help, it was the late 80s).

I've had it since I was a child, diagnosed at 18

DC is almost 15. It went into overdrive at about age 11. We have been waiting 4 years for therapy via camhs. Refused 3 times to begin with. I woudnt wish ocd on my worse enermy.

Not unusual in children. OCD -UK runs parents' workshops and other support.

DD (now 13) has been diagnosed with Trichotilomania which falls under an OCD diagnosis. She first had urges in y5 so about 9 yrs old. It subsided for a bit and then came back in y8.

She has been on the CAHMS waiting list for about 18 months for therapy and we get letters occasionally apologising. Luckily I have BUPA at work and got her seen privately. She had 8 or 9 sessions over c4 months and has strategies to deal with it and can deal with the urges when they occur.

It makes me so sad and angry that such a short intervention can have such a huge impact and yet is not available for a huge number of people who can't go privately. Our children are being failed

Our sessions were £110 each so about £1k if there is any chance you can scrape this together I would highly recommend it.

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Very challenging. I'm sorry. And not uncommon.

The camhs assessor said she shouldn't say this but she gave us a private recommendation..however we can't afford the £125 a session price. When we finally got assessed and saw psychiatrist in December, I thought it was finally imminent that we will get the therapy but still here. They are completely understaffed and over run. The psychiatrist put my dc on fluoxetine even though they normally don't do it before the therapy.

@Cake4tea we saw a chartered clinical psychologist who specialised in adolescents. Thankfully DD clicked with her as the wait lists for others were a good few months. The relationship and trust is key for the therapy (as I'm sure you're aware!)

It is expensive but having been what we went through I'd work a bar job at night to pay for it if I had to - the limbo is horrid and prescribing anti depressants are a sad indictment of our NHS

My 8 yo has OCD and has had symptoms since 5 and half, so he started very young. His dad thinks he had it when he was a child but was the 80s and not really heard off, learnt to control it himself in the end. It's waned on and off over the last couple years, atm it's in overdrive however, and has presented itself in various manners, but all ritualistic of nature. No point me taking him to the GP given the waiting times, we've considered private therapy and I've taken him to some group sessions which were free, but didn't help. It's so hard, it controls him and therefore me since he involves me in his ritual's. It's awful seeing it bother him so much yet It's so very expensive to afford a decent therapist. Nightmare really.

I've had it since early childhood.

I keep thinking we are almost there with camhs but we never get there. Psychiatrist is fighting our corner this week apparently..

@Cake4tea fingers crossed for you 🤞