12yo and SSRIs

[SSRIdilemma]

My 12yo has ASD (low support needs) and OCD and sees a psychologist at CAHMS fortnightly. Their OCD is largely around handwashing/germs. Most days they just clean their hands a lot but they can get very upset if they are touched by others they consider unclean. This has been manageable at primary school but will be more difficult to manage at mainstream secondary from August (we are in Scotland). They are anxious generally and it has been hard to get them to engage in therapy because of this.

It has been suggested that they go on SSRIs. I am not sure about this as I have had little success with them myself (took them for about 10 years from 18, I am familiar with the childhood OCD to teenage ED and poor MH pipeline) and worry about side effects especially on the growing brain. It would be an easier decision if I believed they worked, but in my experience they don't.

Just wondering if anyone else has experience of themselves or their children going on an SSRIS at a young age. It would be fluoxitine or sertraline (both of which I've taken to no great postitve effect though sertraline had fewer side effects).

Who is suggesting that they go on SSRIs, and why, precisely?

I would be very cautious about this. The quality of data in favour of SSRI use in general is actually pretty poor (overall very small differences in the data between placebo and active drug trial arms; studies generally over short time frames not reflecting how long people usually end up taking the drugs; majority of studies pharma-company funded; I could go on...), and for teenagers it's worse (with some scary additional risks). Some people do find them helpful (they do dull down unpleasant - as well as pleasant - emotions) - no doubt about that - but overall the effects are small, there are lots of side effects, and it can also be really difficult to come off them.

I too am familiar with the pipeline you mention, and am sorry that you and your DC have been/are going through this. What kind of psychological input are CAMHS offering? Are there any other suggestions to engage your DC better?

Good to be cautious and research first. Google studies to locate evidence.

I take sertraline and it’s been a life changer. It doesn’t work for everyone but it’s often well tolerated.

Just to add to that - are there options other than mainstream secondary, if you think that will be especially hard for your DC?

This is something I regret not considering earlier - with one of my DC, I by default sent them to a large comp, and they have found it very stressful and bad for mental health. Sometimes, we assume that we have to equip our kids for the mainstream/default, and even medicate them to tolerate it if necessary, when perhaps we should think more about changing the environment instead.

My 17 year old DD has ASD and ADHD. There was a small improvement when she started Fluoxetine at 16. That seemed to wear off quickly. I managed to hold off meds until 16.

Its such a hard decision, 12 is very young. I think changing the environment is much better, and hoping that they settle into life when they are passed the teen years.

I'm currently fighting off the prescription for antipsychotics. As they are now prescribing those to teenagers who aren't psychotic. Without even trying the therapies that would be more useful.

Can you look at CBT techniques? And try to manage the OCD/anxiety that way? I think equipting them with the skills to manage life would be so much more useful and healthy.

I have to disagree - fluoxetine is known to be very effective in the treatment of OCD, and not a huge doses. The effects could be life changing for your DC. I myself have a much younger child taking it and she's so much happier. I couldn't imagine withholding something that makes her able to cope. I don't think there's any evidence to show long term effects on developing brains. You could always try it and see how they get on and if no real effect then no harm done?

Hi, thanks for the replies, I'd almost given up on getting any engagement on this thread.

To answer a few questions:

It is the psychologist DC sees fortnightly who has suggested it, in tandem with a psychiatrist who DC has met a couple of times. The psychiatrist was almost offended that I wanted to do further research and not put DC on meds there and then!

DC is supposed to be having a form of CBT with the psychologist, but they shut down whenever she starts talking about washing hands less etc..

The idea with the SSRI would be to reduce anxiety/OCD symptoms generally and also so DC can (potentially) engage better in therapy.

We live in a rural county with no choice of school within a reasonable travelling distance and no special schools in the entire county. There is a support unit within the mainstream secondary which DC could transfer into later/begin in, but as they have no difficulties academically it is thought being in the unit (where children with learning disabilities and/or ND are taught together) would hold them back educationally and be boring, as well as more stressful due to the disruptive behaviour of some of the other pupils in the unit. DC will have access to a quiet room whenever they need it and won't have to do subjects they find too stressful (eg PE, Home Ec) - they can wait in the quiet room.

It's great to hear that it worked so well for someone else. DC psychologist also says that she has seen a lot of improvement in many taking SSRIs for this reason.

Glad to hear that you've had success with SSRIs, @WardrobeNightmares

@SSRIdilemma - at a group level (from the best current evidence from controlled trials), there is not much clear indication that adding SSRIs to psychotherapy makes treatment more effective for OCD. At a group level, psychotherapy (specifically, CBT, in the form of ERP - exposure and response prevention) works quite well for OCD. When compared with no intervention/waiting list, SSRIs also work for OCD. But when you've already got psychotherapy going on, it's not clear that, overall, adding an SSRI helps any more than ERP alone. This doesn't mean that some individual people don't find it helpful (including to "access" psychotherapy better). Others find it actively unhelpful. It should also be said that in general, most of the positive measurable effects of SSRIs are also seen for placebos (sugar pills). There is an additional (smaller) effect of the active drug over the placebo effect (maybe related to the general blunting of experience), but this comes at a potential cost. We basically don't know what the long term effects of SSRIs given in puberty (especially over the longer term) are, partly because the necessary (randomly allocated/properly controlled) trials to establish this would be unethical. Personally, I worry about how little we know about the effects on things like sexual development (the extent of sexual side effects in adults is only just being acknowledged). But for some people, it's worth the unknowns.

Good luck to you and your DC. It's a tricky decision. Either way, your support and thoughtfulness will be a massive asset.