Rispiridone? anyone?

[essbeehindyou]

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It is the best thing we ever did. Don't feel guilty, it works and certainly makes my DS feel better. Its not just about preventing behaviour that bothers us, he was not only difficult but unhappy.

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here's one of the Donna William's articles about medication. She doesn/t mention rispiridrone drectly there, but has to me in the past.

Glad you replied as you did Davros as I told essbee earlier today that you rated it

Ess...my DS2 (11 ASD, OCD and severe behaviour problems) has been taking this since December. At first it was 'as and when needed' but for last 2 weeks has been daily. The difference in him is astounding! He now tells me that he 'does not feel like his head is going to explode'...which can only be a good thing and as DS1 is about to sit his GCSEs, we are all glad of the 'respite' it has given us. No side effects noticed yet.

Good luck and take care.

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The main side effects we've seen are weight gain and improved sleeping. Liver function should be checked with blood test but DS has stopped co-operating! New Paed told me not to worry about it. So YES, DS does still take it although in the past we tried several times to reduce the dose to make sure he was at the lowest level needed. Each time the behaviours returned very quickly so we eventually decided to stop messing about and stop feeling guilty and just accept giving him the dose he NEEDS. I have never heard of it being given "as and when" as I thought there was a build-up effect (mind you, when we reduced it the change was fairly quick, I mean a few days). The dose must be increased if behaviours/problems recur and in line with weight increase. Several times in the past we wondered if the medication was causing certain behaviours but we realised that, of course, these were the very behaviours that had prompted us to seek med advice in the first place! It is hard to separate your feelings about it from what is actually happening. Good luck, I hope find it helps.

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Interesting - haven't looked into this yet. What behaviours does it manage and how young would be old enough to be prescribed this?

essbee, if it works, do it. good luck.

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I asked about it at our last hospital review meeting in November, to help with J's anger. J was just approaching 8 at the time and I was told that they wouldn't even consider prescribing it for one so young (they actually thought he was 9), though I have heard of it being given to much younger children. In the US they seem to dole it out willy-nilly, but I think medication is more of the treatment culture there.

I guess it would depend on the level and type of behaviour that needs to be addressed, whether or not environmental changes have been implemented and had any effect, the age of the child and the level of disruption the current difficulties are causing to their life. I'd expect the opinion of the consultant would matter a lot too - some have rather narrow thinking and stick very rigidly to 'the rules' so may not prescribe on those grounds.

Essentially Rispiridone is an anti-psychotic drug and it's not recommended for very young children, but the fact that there seem to be quite a few children well under 15 taking it shows that there is room for manoeuvre in that.

DS was 8 when he started taking it (nearly 12 now) and we had tolerated, managed, worked, ignored etc etc as much as we could. Regardless of how it made us feel and behave, we did it because we truly felt it would help him and it has. He is still very much "himself" and has as strong a personality as ever, but now he is much more able to enjoy himself. The behaviours have far from gone away and he is very typically autistic, always developing new and exciting ways to challenge us! But problems are generally easier to manage, shorter lived, less severe etc. Many drugs are not licensed for children because it would be very hard to conduct clinical trials but a good Paed/Dr should still be open (and well informed) and willing to prescribe with good monitoring and communication. I can always email our Paed between appointments if I have any worries or need advice.

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Can I just ask how you got prescribed this - we think ds2 as well asd, has adhd he is very anxious and obsessive and his behaviour is getting a lot worse. Our key worker at CDU has left with no replacement, the paed was only interested in his sleeping problems and to top it all DD has still not started talking at nearly 2 and has started lining things up and shrieking like ds2. The first few months after ds2's dx were great lots of support, now nothing. I donlt know who to go to for what tbh, my HV is usually good but she is on her honeymoon.

My DS2 was prescribed this last year because he was getting really strung out about his GCSEs. The first day he took it I had a call from his TA during the day asking what was wrong with him because he was so quiet!!! He told me it made him feel mellow.

He's taking it on an as-and-when basis, plus daily Concerta XL

Re tiredness. We split DS's dose into 2. One in the morning and one when he gets home from school, it is now half and half but we did other versions before deciding on this. It works really well as I worried a lot about him being very tired during the daytime. M2A, this was prescribed for us by DS's Paediatrician. I think it must be someone that level as, like many meds, it hasn't had clinical trials for children plus it must be monitored regularly so we have an appt with Paed every 3-6 months depending on how things are going.