Fluoxetine for autism - any experience?

[ButterscotchWhip]

Hello,

My ds is 6, severely autistic and non-verbal. He is prone to awful meltdowns, very agitated and a near-constant self-harmer. He has an EHCP and goes to a lovely supportive school. We've tried all the various CAMHS suggestions which don't work. We have had enough of being told to 'try PECs' or 'try music therapy' when he's smashing his head into walls etc. They wouldn't help us with seeing a psychiatrist, so we've gone private.

We've met a great psychiatrist who specialises in autism and he's prescribed fluoxetine - a very low dose which we increase fortnightly. He's up to 4.5mg now. Nothing has improved, but his sleep has worsened. He has been starting the day at 4am. We were advised to hold our nerve and stay on the meds, with the doc suggesting we keep increasing gradually. For the sleep problem, we were given a prescription for Slynto (slow release melatonin). He's been on this for a week and now wakes consistently even earlier at 3.30am. Occasionally it's earlier, 2.45 or 3am.

We want to come off both these things as we feel the meds don't suit him, he's absolutely not become less anxious, he is presumably exhausted and our family life is a complete nightmare. I was just wondering if anyone has had a 'journey' with fluoexetine and can share their experiences. Can it get worse before it gets better? Did you find suitable alternatives? We don't know any other families in our position.

Thanks in advance.

Yes, things can get worse before they improve. Although sometimes the first medication tried doesn’t work. Medication is trial and error. Both in terms of which medication and also in terms of dose.

At the risk of annoying you with another suggestion, has DS has a proper OT assessment (including sensory OT and a home OT assessment to look at how the home can better meet DS’s needs) with ongoing OT provision?

I have heard great things about fluoxetine but for older children.

We tried risperidone and I wished I had persevered , I didn’t think the low dose worked but then when my son came off it (started at 15, only for 2 months) his aggression was worse , and I couldn’t go back on it as the neurologist said if I hadn’t noticed a difference on a small dose he was reluctant to carry on. In hindsight I think it’s because I annoyed him by asking for telephone calls every 6 weeks to tweak the medication. I don’t think I would’ve had the same experience if I had gone private, but I now know that my son would’ve needed blood tests routinely on this particular type of medication and he wouldn’t be able to tolerate that. But i regretted stopping everything instead of looking for an alternative.

My son is now 16.5 and has severe autism, largely non verbal. , we’ve had some really hairy months and I can’t say we won’t experience more , and how I wish I had engaged with a psychiatrist earlier on to walk this path with us to keep our family life stable.

Medication can do this so relay your thoughts to your psychiatrist.

I have also heard that fluoxetine is very good for anxiety and PDA traits . This may not be apparent at your son’s age.
I don’t think it was such an issue when my son was 6, but it was an issue from 12 years old and the only experience I have of this medication is in a child after this age.

Melatonin we are on concerta and that’s worked well for us at the lowest dose 2mg , crush the tablet.
it just gives him a nudge to fall asleep. Probably awake by 5am.

I will be honest I used to Co sleep as that was the only way he would stay asleep, but I know that’s really not the ideal.

At 6 years old we even tried ADHD medication as my son seemed to fit the profile, we did Medikinet till 9 years old when I stopped. It was quite clear the medication at a low dose was zoning him out and he was compliant but that wasn’t the goal to be zoned out. If anything , any adhd traits were overlapping the autistic ones and the actual barrier for my son was his autism, and S learning difficulties -which at 9 was obvious.

A change of provision followed as the aggression started and he has thrived in his current provision, which is above special special, basically the last day provison before

residential school , which we were
not ready for at the time.

I have told you the above because at 6 years old your son will benefit from trying many different approaches some
medication, some therapies, but don’t lose the psychiatrist, along the way you’ll need all these professionals to work with you so keep them all close.

I hope you have a social worker , and can access carers through them, keep talking on here, we are a small tribe of parents with children who are severe, we can all help , even if it’s a handhold.

@Lesley25 if you want to re-look at medication, can you request to see someone else? Even if Risperidone didn’t work, there are other antipsychotic medications to try, e.g. some find Aripiprazole more helpful.

Do you mean Circadin as the brand of melatonin DS takes rather than Concerta? Concerta is an ADHD stimulant.

Sorry I did mean circadin @StrivingForSleep

i looked at private psychiatry but due to my son’s reluctance to leave the house with me, seeing someone would be nigh on impossible, and I wasn’t prepared to do it over zoom , and all the research was pointing me to my son having to be monitored through blood tests , and that’s also impossible to do without sedation.
we are managing- just, through demand avoidant strategies and picking our battles.

The goals always been to have him with us till 18, the residential colleges I’ve looked at have medical facilities on site, this would make this process easier if we need to go down it.

@ButterscotchWhip what I just wanted to say was look at other possible medications , and everything around your son re provision , activities food sleep, maybe change the melatonin brand, but don’t fo what I did and dismiss all medications - if I had done that, it bounce meant an easier time then the last few years have been.

@Lesley25 @StrivingForSleep
Thanks so much for taking the time to reply to me. It’s really great to hear from people who get it.
@Lesley25 We don’t have a social worker, never been allocated one. I wasn’t sure how one would help. But we did qualify for respite care very recently so a Saturday carer is part-funded. It’s a relief. We were also referred to TCaps because (I suspect) CAMHS thought we were all on the brink of something bad.
Great that you found a setting for your son to thrive in. Mine loves school largely (he’s in an autism resource base at a mainstream primary, but I do think he will need something more specialised when he leaves).
Interesting to hear about Circadin, I’ll keep that in mind. At this stage I’m inclined to drop the Slenyto but keep going with the Fluoxetine.

I don’t want him to be totally dulled down, but quite honestly he frequently seems to need sedation. He’s like a wild animal and it’s particularly frightening for his little sister.
I absolutely hear you on the blood tests problem (my son would need sedation for anything like that too). He went to the psychiatrist’s office once and screamed the building down so the meeting ended rapidly. We’ve done it all via phone which is not ideal but the dr is very kind and supportive and we will stay under his care.

@StrivingForSleep We have had an OT assessment as part of his EHCP. Not sure we’ve had much feedback about the home environment.

What I don’t really understand is if my son also has adhd, PDA, anxiety, depression etc. Perhaps finding the right medication would be easier if we knew what exactly was going on, but I just feel lost.

Thank you both again - sending you strength!

You can request a home OT assessment. Did the OT assessment as part of the EHCNA include sensory OT? Lots of OT assessments undertaken as part of the EHCNA process are poor. Independent assessments are a world away. And does DS receive ongoing OT input?

Is the carer funded via continuing care, social care respite or the short breaks offer? If not via social care, it is worth requesting social care assessments - a carer’s assessment for you and an assessment via the disabled children’s team for DS. If not via continuing care, you might want to consider if DS would be eligible. And if not via the short breaks, it is worth looking at your LA’s offer.

I often feel we are missing a piece of the jigsaw with DS1, so I understand not feeling as though you have all the answers.

@StrivingForSleep you can request a social worker , your son has a disability and if home life breaks down , it is that department that needs to fund care, pure and simple and I also will say -quite quick when they see how full your plate is.

Self refer , Pm me your LA and I’ll have a google for tel numbers , but you absolutely need carers and this can be funded through direct payments - which means you can find a carer, I can help you with that.

We approached TAs form my son’s school and offered an attractive hourly rate given the fact my son also needed 2 carers to work with my son due to his needs, and behaviours. One carer isn’t enough and when you have a social worker allocated, they will make the assesment themselves.

The social worker will carry out a child in need assessment and also look at respite breaks in your area whereby your son will go overnight say, once per week during school time but I appreciate that’s just an option.
The main purpose is social workers want you to keep your child in your home so will give you options.

The reality is parenting a child like ours, is so very difficult that due to family breakdown and everyone’s sanity at risk, often children do end up in care, but there are other possibilities before this point- like even residential school.
I know they seem a distant prospect but the aim is to support you now and a social care assessment can do that relatively quickly- especially if you are at breaking point.

Ot assessments , SALT can all be accessed through a social worker. But get that social worker, a break and carers make the difference now.

@StrivingForSleep He receives OT as part of his EHCP but I might look to top it up privately. At the moment it seems additional SLT is more important (I found a private person who resigned after three sessions with him). But perhaps not.
We get our weekend carer funding from short breaks.

On their website, Contact has model letters you can use to request social care assessments.

If DS needs more SALT or OT, it should be in DS’s EHCP. When was the last annual review?

I have looked after someone with autism who sertraline has worked for very well. But he is older than your DS. It was like turning a light switch on the speed it worked.

Since I posted this, I looked into increasing ds' magnesium dose (within advised levels, obv) and he's had more running around outside time, and we've had a couple of 5am lie-ins. He actually woke me up at 5.40am one morning and I was elated for the whole day!
@Luddite26 Thanks for the info, I'll bear that in mind for future. Happy to hear that something worked so well.

omg fluoxetine for a 6 year old? iv been on these for a few years on and off for depression and let me tell you the way they make me feel I wouldn't like any adult to feel like it let alone a child,obviously I know it will be a different strength but I can't believe they have given that,this has thrown me so much,why are they not trying ritalin or anything like that? that's actual meds for adhd not a anti depressant,please stop giving him them it will not get better i promise you,I get mad racing thoughts and so impulsive when on them and for a child I can only imagine there doing the same thing which could be making he's behaviour worse,ring your gp and tell them and see what they say about it,iam in shock I really am,there is alot of medication out there for adhd but zero for autism,maybe speak to who prescribed it and say look I don't want him on them,I'd rather have my child on nothing than on these,there the old prozac just renamed,please please please get a second or even a third opinion,I'm no gp but iam a care worker and administer alot of medication for alot of people of all ages and non with adhd or autism have fluoxetine hun

Ritalin is an ADHD medication. The OP doesn't mention ADHD and is unlikely to be prescribed to DC who don’t have ADHD.

The GP is unlikely to be much help. For children, antidepressants are only usually initiated by psychiatrists.

Fluoxetine helps some autistic DC. It also helps some autistic adults.

Whilst there are no specific medications for autism, there are medications some autistic individuals, including some children, take, such as antidepressants, antipsychotics, medication to help with sleep, beta-blockers like propranolol… Not everyone does, of course, but it isn’t uncommon.

oh wow that's good to know then,it's only as i say my personal opinion as i take it for depression and when I first start taking it I feel so strange for a good few days, seen as you know a fair bit by the sound of it once my child gets diagnosed with autism does that mean they can then prescribe him things to help with he's sleep? I know my gp can't give anything to my daughter for her sleep problem until she's seen phycologists as she has suspected bipolar so done alot of research on her behalf but never thought about them been able to give my younger child medication to help they have always sent me to a place here called kids who do alot of things for send children and one been a sleep clinic and not once have they mentioned medication they just tell you to make it calm and relaxing and all this stuff but when your trying to do that with a child that's bouncing off the walls still at 1 in a morning and you've literally tried everything you can it annoys me when they say just keep doing it,what else can I do really apart from the obvious keep doing it lol,they bug me so much,make you feel like you just let them do what ya want and ya don't want a good night's sleep yourself lol,but thanks for that its good to know x

@Itsyourwifeymacrid with antidepressants, things can often get worse before they get better, which might explain how you felt when you initially started fluoxetine.

A diagnosis of autism doesn’t always mean medication to help with sleep is prescribed. It depends on the individual’s circumstances. And sometimes medication is prescribed without a diagnosis or before a diagnosis. But, yes, although some GPs will, most GPs won’t start medication and prefer medication to be initiated by a consultant or pead.

I couldn’t be certain, but I don’t think Kids’ sleep services offer medication as part of their offer. You could ask for a referral to an NHS sleep clinic or paeds - a referral to a sleep clinic or paeds for sleep medication may be quicker than waiting for an ASD assessment.