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Meds for autism and anxiety - abilify?

(9 Posts)
lifeonhold Fri 14-Nov-14 17:34:57

Hi everyone.

My lovely girl is now 17 years old and has mod/severe asd and learning disability. She is extremely routine bound and very very anxious. Although having said that I'm writing this in November and its dark, windy, raining hard against the windows and its the worst time for her. She can be sunny and relaxed but mostly her anxiety drags her down, stops her accessing things and is generally heartbreaking.

So I've just had a pead appt and he's suggested 'abilify' aripiprazole. Its like risperidone he says but better for girls (due to a possible side affect with risp affecting breast tissue??..). its an anti psychotic drug it seems mostly prescribed for bipolar nd schizophrenia, but there is reference online to treating anxiety and 'irritability' associated with asd. Mostly from american sites though.

Anyway I'd love love love love to hear from anyone who has had any experience with this drug for autism and anxiety. My daughter will find it very hard to describe any side effects or how it makes her feel, and it scares the shit out of me that I will make the wrong decision...

Thanks x

NoHaudinMaWheest Fri 14-Nov-14 21:29:07

I'm not sure how useful my experience will be but here goes.
My ds is 18. He has HFA/Aspergers and until very recently had very severe OCD. He had been treated with fluoxetine for several years but his OCD was increasing again so about 2 years ago a small dose of aripriprazole was added. We were told that it had fewer of the severe parkinson type side effects in young people than risperidone.
He was and is on a tiny dose (2mg - the usual minimum dose for schizophrenia is 15mg).
When he first started he became very sleepy and we reduced to 1mg which helped. He was also starting to get headaches but again the smaller dose stopped them.
He went back up to 2mg when his OCD worsened again and didn't have any side-effects this time as far as I know.
Ds is quite articulate about some things but has zero vocabulary for describing his feelings so I don't know how it made him feel. He could tell us about the headaches though and the sleepiness was very obvious.
It seems to have stabilised the OCD but it was never going to be a cure. However being stable made it easier for him to access psychological treatment and he is now immensely better.
I realise your dd's situation is different but for us it was worth a trial. I would want to start at a very low dose though.

OneInEight Sat 15-Nov-14 07:05:21

I have no experience of abilify but ds2 was on risperidone (another anti-psychotic) for a couple of months for anxiety.

ds2 is verbal but most of the side effects: sleeplessness, increased appetite and increased need to go to the loo were very apparent anyway.

it did help take the edge off the anxiety a little bit at first & help lift his depression but long-term for him was not a solution as the side effects caused him to become psychotic after a couple of months.

This is not to put you off, this effect is rare, but to warn you to start with a very low dose and monitor carefully the side effects especially erratic behavioural changes.

JJXM Sat 15-Nov-14 07:18:48

I don't have ASD (DS has it) but I do suffer with crippling anxiety and have lots of experience with anti-psychotics. The newer types can be used off-label to treat anxiety. I took risperidone for a number of years - it causes high prolactin levels which can make your periods stop. I've also tried olanzapine and one of the common side effects is weight gain. I take quetiapine and it works well for me - I take the slow release stuff so I have a constant level of calm all day. I asked to change to abilify but my psych said there were many side effects but that may just be his personal opinion.

All of these drugs have similar side effects. The biggest one is sedation and they will all make your DD tired but she will gradually get used to this and a low level of sedation helps with anxiety. Quetiapine has really helped my anxiety ( I was unable to keep any food down and would end up hospitslised).

I've just realised that you probably aren't meant to talk about meds on MN and have edited my post accordingly.

sweetmum4 Sat 15-Nov-14 13:51:03

MyDD is 13 and severely Autistic with anxiety issues related to puberty. She is on Abilify 15mg at the moment. We started with 2mg and increasing slowly to 15mg. She was given resperidone, which made her eat every thing even clothes and papers and she put on one stone in weight in one month. She was very hyper and self harming a lot. She is much better with Abilify and sleep well during the night.

lifeonhold Mon 17-Nov-14 14:36:59

Thank you so much everyone, I've been offline over the weekend and have just caught up here.

NoHaudin I will make sure we start low dose, this hasnt been discussed at all yet. Tbh though sleepiness atm would be great, her anxieties are causing sleepless nights. And then the sleep deprivation leads onto more anxiety. Although I guess it could also have a negative effect on her moods if she feels worn out.
OneInEight am worried about mood changes and 'rages' it will be very hard to tell whats what as she does have a typical asd profile including meltdowns...
JJXM thanks you so much for sharing your experience. My daughters appetite is also poor (when she's anxious, but great when she's not), it can take her an hour to eat a biscuit, and she sometimes vomits purely due to anxieties. Her weight is ok, just. What was it that you liked about abilify to make you ask your doctor to change to it?
Sweetmum your daughter sounds like mine. How long did it take to go from 2mg to 15mg? my daughter is about 7.10 stone, 5'6" ish

Also, they want to take bloods but this really isnt an option, so we discussed starting without, and have some play therapists do some work with her to build up to blood test in future. Good luck i say. Is this important, do docs always take bloods before starting on meds? She has never had any medical care, due to luck partly, and also of course anxieties/ refusals..

Thank you all x

sweetmum4 Mon 17-Nov-14 15:27:05

We manage to get her blood at that time but now she won't let anyone come near her with a needle. It took 8 months to build up to 15mg.She is also on propranolol 30mg as well.

NoHaudinMaWheest Mon 17-Nov-14 16:02:03

apripripazole can cause liver and heart problems which is why they usually do bloods (ds also had an ECG) before starting and annually thereafter.
Fortunately ds had got the the point where he just about coped with both when he started and he is actually ok with the bloods now.

I am not sure how important they are if there is no prior reason to suspect a problem.

I know ds when he was younger started on sertaline without blood pressure monitoring because he absolutely refused to have it done.

lifeonhold Mon 17-Nov-14 21:19:58

Thanks both

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