Anti-anxiety medication ASD PDA

[Dorothyparker010]

Just after some advice really. My DD8 is autistic and we’re fairly sure PDA. I would love for us to have a more functional family life but right now doing anything is so hard due to her need to control everything plus violent outbursts. I’m thinking of asking the GP about anxiety medication but wondered if anyone has experience with this and if it helped?

she’s waiting for an ADHD assessment too. I’ve read that antidepressants plus adhd meds combined can help but this seems like a lot so young 😵‍💫

Hi OP, the gp won’t prescribe antidepressants or ADHD meds to a child. We’ve been attempting to get support for ds13 who has ASD and has been suffering with anxiety and self harming in meltdowns. You have to get on the eternal waiting list for CAMHS. We’ve been to the gp for his anxiety (he has what looks like OCD and a phobia of dying in his sleep which means he refuses to sleep). The gp said they couldn’t prescribe anything to a child and put him on the CAMHS waiting list, as someone who’s been under mental health services for anxiety (I’m also autistic) and self harm, they try the non medication route first in general. As you probably know, the CAMHS waiting list is stupidly long. It’s a nightmare, particularly when you can see your child struggling and you know that antidepressants would likely help. On a positive note, medication really helped turn stuff around for me (when I got on it). I hope your dd’s anxiety gets better soon - and sorry if this doesn’t make sense, I’m half asleep!

Have you had a parental intervention to help you reduce triggers in DC's environment and support DC safely during meltdowns? If not, think you need to push for this.

ADHD meds (and antidepressants) would usually be consultant-led.

@Whatsthepoint1234 thank you for this! I’m sure our GP mentioned that they do sometimes trial antidepressants for children when there is a clear need as a stop gap due to CAHMS waiting lists. I’ll see what they say anyway.

@Eaudesud yes absolutely, we have explored this, been on a course, and try very hard to reduce demands to a minimum and keep everyone safe but we’re finding there’s only so much the environment can be changed especially when there’s siblings/work/school/commitments…

really I was just wondering if others have found meds helpful for PDA anxiety or whether it might even make things worse 🤷🏻‍♀️

Have had a year's worth of Psychology support for autistic DC who is demand avoidant (with challenging behaviour), suffers from high anxiety, and EBSA. No meds even discussed beyond for ADHD.

I wish you luck! I bloody hope they do as I’ve arranged another appointment for ds who is now refusing to sleep or take his epilepsy medicine. Dh weighed and measured him in boots and hes 178cm and only 42kg. I hope you can get some support from your GP - I really hope they are of some use! Honestly OP if you have the money to go private I would, in our area CAMHS is like as easy to access as Area 51. Sorry my rant I’m just angry that they can’t do better for ASD kids
🙁.

https://evidence.nihr.ac.uk/collection/antidepressants-for-children-and-teenagers-what-works-anxiety-depression/#:~:text=If%20a%20GP%20feels%20a,prescribe%20antidepressants%20despite%20the%20guidelines.

It mentions they can do it for teenagers if it’s urgent to treat their mental illness however it’s against NICE guidelines. I can’t find anything for children though however it’s my understanding that they only let CAMHS do it and it’s therapy first. Who’s doing the ADHD assessment?

Hi. I'm in a similar position (although different issues) with DD7 who is ASD and currently rejecting clothing. She also has high anxiety levels and we're so desperate for her to get some help and meds if it will help, but similarly don't know where to turn. The paediatrician we have seen isn't making many suggestions and we're trying to get a private psychiatrist to help but they are also like gold dust at the moment! Following to see if anyone else has had meds prescribed for a young child.

I do know under 10’s who’ve been prescribed antidepressants. Usually for OCD. They use either fluoxetine or sertraline. From my knowledge it requires CAMHS to prescribe (or any private child psychiatrist). Where are you based? I know of a couple of good chuld psychiatrists in the Southampton area.

@Whatsthepoint1234 that's interesting thank you! I'm nowhere near Southampton sadly... but I am willing to travel if I can't find anyone closer!

Sadly we aren’t either! I don’t know about you but we are in the arse end of nowhere and finding a child psychiatrist with an autism background is nye on impossible.

Methylphenidate (aka Ritalin or Concerta) can ramp up anxiety. DD is an adult with ADHD, OCD and social anxiety. She was prescribed methylphenidate and antidepressants; but as the methylphenidate sent her anxiety through the roof, they had to give her a beta blocker to control the physical symptoms of the anxiety. She’s also been told to take promethazine, an anti histamine for the anxiety. As she’s over 18, she can’t have melatonin for her sleep problems. She either takes anti histamines or Nytol, although on occasion, a psychiatrist has given her a few sleeping tablets.

I can’t imagine a GP wanting to prescribe that cocktail without a consultant’s say so?

PS - a consultant may need to prescribe the non stimulant ADHD drugs, because as the name suggests the stimulants can stimulate the anxiety!

@Quisquam my dd has just been prescribed a v low dose of Ritalin (or equivalent - actually tranquilin) despite not making the adhd threshold on the QB test as the paediatrician thought it might take the edge off her anxiety enough for us to be able to discuss the thing that's making her most anxious! She's been on it for a week and so far no ramping up of anxiety, but as I say it's a very low dose just for the mornings. I haven't noticed a positive or negative effect to be honest! But my fear was that we would see some dreadful behaviour as a result of the stimulant...

@WardrobeNightmares DD only suffered overwhelming anxiety, when she reached the full dose. DD was so anxious on Concerta, she collapsed before exams, until they gave her Propanol, and she’s also been prescribed Cyclizine, an anti-emetic iirc. However it’s like all these things, some people react differently, but the literature does recognise the stimulants can make anxiety worse. If we took the stimulants, they’d be like speed for us, whereas people with ADHD, it calms them down and helps concentration.

I gave “normal” DS phenergan once, to knock him out for an 8 hour flight as per the pharmacist’s advice - he was hyper and never stopped talking for 8 hours! It was exhausting!

DD has in the inattentive type ADHD, so behaviour was never a problem, except when it was driven by the emotional volatility, which was huge. The medication calms that down, until it starts wearing off in the evenings. DH clearly has ADHD, and is hyperactive, but he could always behave at school - however he spent all his free time as a child, playing football, so he probably wore himself out. As an adult though, it’s just exhausting to watch him! For me, the most relaxing part of holidays with him, is the flight home!

Just to update this. We have a private psychiatrist appointment in a couple of weeks - I spoke to the psychiatrist over the phone to explain the issues we are having and he said that an SSRI would be a good place to start. Whether he agrees to it once he's assessed DD remains to be seen, but it seems it is possible to find help. Eye wateringly expensive though.

@WardrobeNightmares thanks so much for the update! Hope the app goes well 🤞. We’re still waiting to hear what the gp things but I’ll report back. My DD has just started at a special school too so am hoping this will help.

Hi @Dorothyparker010 - did you manage to get anywhere with the gp or anyone else? And @Whatsthepoint1234 have things improved for your ds? DD has been on v low dose of fluoxetine now for about 4 or 5 weeks. No change in behaviour (positive or negative!) but dose due to increase so hoping for a miracle with her behaviour!

Thanks so much for coming back to the thread @WardrobeNightmares ! Do you feel there’s been any affect yet?

For various reasons I’m still waiting to speak to the GP but should be able to by the end of the month so I’ll report back.

We got a letter removing us from the waiting list for ADHD assessment, after being on it over a year, due to “minimal evidence assessment is needed” which is laughable, so I’ve been thinking of going private, maybe Psychiatry UK, for both ADHD assessment and anxiety help, especially if the GP can’t really offer anything.

Hi @Dorothyparker010 - sorry not to reply earlier! How are things? We're still on a pretty low dose of fluoxetine but things are a lot calmer. Still plenty of outbursts but lots less, and she's easier to manage overall. I couldn't say for sure that it's the fluoxetine that's helping but it isn't hurting and enjoying an are definitely better. I still feel on a knife edge knowing that things could change again! How about you? Are things any easier with your DD? I also hope that things have improved for @Whatsthepoint1234's DS.

@Dorothyparker010 @Whatsthepoint1234 and @WardrobeNightmares I'd be super interested to hear how you are all getting on...!

Did you get anything prescribed via GP in the end?
Did you get to a psychiatrist and get a prescription?
How is it helping?

I'm near Southampton and looking for psych recommendations.

My DD9 is diagnosed ASC and PDA, 2024 has been a serious crisis year for us and after two really extreme and violent panic attacks we've just EHE. That has taken so much pressure off but still the anxiety and controlling behaviour is sky high.

I'm now exploring meds, I have a GP appointment on Monday to try and get a referral to an outrageously expensive ASC specialist child psychiatrist with only 4-8 week waiting list. I'm going to ask about sertraline and two other drugs - risperidone and guanfacine.

Looking for advice and experiences!

@sleepworkmum Sorry I didn't come back to check this thread... how was the GP appointment? So my DD has been on fluoxetine for a year now. I don't know what it is that has helped us - a mixture of low demand, school being very understanding etc and probably the medication! We bypassed GP and went straight to a private psychiatrist who basically seemed to be happy to give whatever I wanted! So I did a lot of research. By the time she saw him, she had started wearing clothes again and had already calmed down a bit, but he said that if she had still been in crisis, he would have prescribed an antipsychotic. He was happy to prescribe the fluoxetine to help with the anxiety though and she no longer has such massive anxiety/panic attacks. I think fluoxetine has less side effects than sertraline and probably better tolerated by kids? The idea is to take her off them now slowly over the next few months, so hopefully things will remain settled! Good luck and happy to chat more if it helps.

@WardrobeNightmares thank you for checking back in. I'm glad it sounds like its been a calmer year and the fluoxetine is working for your DD.

My DD has her first appointment at the end of the month, so we havent been prescribed anything yet. We also went private.