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SN children

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Original poster

risperidone..........anyone have experience of this?

29 replies

bonkerz · 21/04/2010 21:37

My Ds is starting on this tomorrow. He has been given it after months of considration on my part. His behaviour and anxiety has reached an all time high and control has been a major issue. he has started harming me and his sister and his self esteem is rock bottom.
He is due to start tomorrow night on 0.25ml so a very small dose and this is increasing over the next 4 weeks under supervision from doctor.
Im terrified for him. Will i lose my boy? will i get him back?
fear of the unknown for me! Ds is not bothered! LOL

Does anyone have experience of this drug? has it worked for you? any side effects?
TIA

OP posts:

daisy5678 · 21/04/2010 21:45

J isn't on it but it has been mentioned. The research I did didn't help much but I do wish you luck x

Original poster

bonkerz · 21/04/2010 21:46

thanks givemesleep. Im so worried i have started ds off on a path with no return ...... its scary!

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ByTheSea · 21/04/2010 21:59

DS2-13 has been on it for about 2 1/2 years. We also had resisted medication for a long time but things had become unbearable. It has helped calm his violent tendencies and takes the edge off his anger. For the first year he was on it, the rest of the family were a lot safer, but now he is older and his hormones have kicked in and unfortunately he is now in a residential placement for our safety.

That said, he hasn't gained weight abnormally and doesn't seem to have side effects except sometimes he gets so used to it that it doesn't work as well, so we take a mini-holiday from it for a couple of days and then go back (with the psychiatrist's blessing). He is on .5mg twice a day. Recently, he asked to try reducing the dosage, but then asked to re-increase it a week later when he was feeling too edgy and was clearly not in control.

ArthurPewty · 21/04/2010 22:14

This reply has been deleted

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WetAugust · 21/04/2010 23:18

Hi DS tried it - it turned him into a zombie - we insisted he came off it. I woudln't touch it - but every child is different.

donkeyderby · 21/04/2010 23:50

DS is on a very low dose - 0.75mg per day but it makes a very slight but important difference to his anxieties and obsessions and levels of violence. No weight gain or any other obvious side effects. He came off it for a bit and his respite home requested he go back on it as he was so shouty and difficult.

I don't think you are on the path of no return as your DS can come off it as quickly as he went on it.

There is great resistance to drugging children which I can totally understand and all alternatives should be explored. However, I think we are too ready to leave children and adults with LD in psychiatric torment due to this anti-medication attitude. This would never happen in people with severe mental health problems or people with physical pain for that matter.

It has to be an individual choice based on what your DS gets out of it.

Original poster

bonkerz · 22/04/2010 08:27

thankyou all for the advice and information.
I did some reading last night but it doesnt give you a clear picture of what to expect.
Im scared of losing my son to this drug but am relieved to hear it has also had a positive effect for others.
This decision has been put off for 2 years. Right now i can see all the good work that has been done in the last 2 years being undone by DSs high anxiety levels. We have seen his self esteem drop dramatically and his anxiety is making it hard to build up again.
You are right, i havent taken this decision lightly. 4 months ago his school asked me to consider meds and i have taken this long to watch DS and record his moods etc to decide that this is the only option left for me and him. He is attacking his 4 year old sister and started to attack me (which hasnt happened since he was small) and this terrifies me as he is now a tall strong 10 year old.
He actually seems quite calm about the whole meds thing so far as we have been discussing options with him etc and have kept him in the loop for the last 4 months.
he starts tonight on 0.25 so we will see.

what time do your children take their night meds? we have been told early evening.....is 5pm too early? he goes to bed at 8pm. TIA again.

OP posts:

weegiemum · 22/04/2010 08:34

Just wanted to say that I don't have experience with this medication in children but I have taken it myself, for periods of about 3 months, twice in my life when I was suffering from psychotic symptoms linked to very severe depression.

For me it was fabulous, I took 1mg in the morning and 2mg in the evening (about an hour or two before bed - these are adult doses) and it made a huge difference. I was quite sleepy on it but given the level of agitation and other symptoms I had without it, it was worth it. One thing I experienced was that if I "fought" the sleepiness then I would be up all night, but if I just went with it when I felt sleepy then I slept very well.

I don't know why your son has been prescribed it but I wish you both well and hope that it makes a difference for you and the whole family.

Original poster

bonkerz · 22/04/2010 08:41

he has asd and odd and is currently on melatonin anyway for sleep which we have been told to continue with. Dss ASD is causing huge issues with anxiety which is increasing his aggressive behaviour.
thanks for replying weegiemum. all info is useful to me regardless. thankyou

OP posts:

Clarissimo · 22/04/2010 08:51

bonkerz I know I have some research I an access on risperidone and ASD (have linked it to my Lecturer before now), you want it sent to you?

Lecturers at Uni didnt even realise it could be used with ASD which I think shows just how poorly known risperidone is atm: something I would consider with ds1 though absolutely

Davros · 22/04/2010 09:04

Donkeyderby has put it so well. DS has been on it for several years. We too got to a point where things couldn't continue. We were living in chaos, he was very unhappy and he couldn't do most of the things he enjoys as he was unmanageable. Imo you won't lose your son, you will quite possibly find him, we did. It hasn't stopped all and every outburst but it has made things more manageable, more relaxed. DS is in a residential school now, which I think was always on the cards eventually, but I think taking Risperidone put it off for at least a couple of years. HTH

Original poster

bonkerz · 22/04/2010 09:28

clarissimo, that would be great. i think you are on my facebook if you are CP. may have it completely wrong though lol

OP posts:

Clarissimo · 22/04/2010 09:37

yes thats me- can you FB me (I cant work the bloody thing out LOL) and I will c&P the study back to you

Original poster

bonkerz · 22/04/2010 11:19

have posted on your wall on FB. Thanks again!

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imahappycamper · 22/04/2010 20:11

bonkerz my son is 15 and has Aspergers. When he was about 12 his behaviour started to get out of control. The school (like yours) kept asking us to consider medication and we resisted for quite some time.(They had several other pupils who had really benefited) We gave in when he was 13, because he was becoming dangerous and very aggressive.He also experiences a lot of anxiety and has vocal tics. The aggression and anxiety were reduced but the vocal tics continued to come and go at about the same level.
He hasn't looked back. One of his problems was puberty. Although he copes quite well with change the biggest change of all was happening to his body and he could not cope at all. We are now at the stage of gradually reducing his dose. He has matured a lot and is now down to 0.25mg in the morning and the same at night. He did experience quite rapid weight gain but he also grew quite a bit.
I think most experts would say that work has to be done on behaviour alongside the Risperidone, but we found it gave him "thinking time" and he became much more reasonable and easier to manage. He did not become a zombie. His normal personality is quite cheerful and that was actually restored once his depressio ahd eased. A few months after he started it he bega talkig about "When I was depressed" as in "I don't feel like that now".
I must admit that when the Comm Paed suggested we start reducing the dose I was very aprehensive that we would return to the bad old days, but we always have the proviso that if that happens we can increase the dose again, but so far that has not happened.
Sorry, this is a bit long but as someone who has been there just wanted to put the ppositives.

Original poster

bonkerz · 22/04/2010 20:14

thanks so much imahappycamper......positive stories are good.
DS took his first 0.25ml tonight. he still seems really calm about it all and im really glad he seems to understand why he needs this med. IM not expecting miracles and i guess it will take a while before we see a difference.

OP posts:

imahappycamper · 22/04/2010 20:26

It isn't a slow release so you should see a difference within a few days. However 0.25 is very low so it might take a while to reach the optimum dose for your DS.
Really hope it helps your DS. Best wishes.

Original poster

bonkerz · 22/04/2010 20:32

DS is having 0.25ml tonight and tomorrow night then he is having 0.25ml at night and morning till thursday then it will be 0.5ml at night and 0.25ml in morning then on day 14 its going up to 0.5ml morning and night. got review meeting in 4 weeks.

OP posts:

ByTheSea · 22/04/2010 22:19

bonkerz, you should see a change quite quickly. DS2 normally takes it first thing in the morning and then again in the mid-late afternoon, so we can get the maximum waking hours of benefit. Good luck and I hope to see you posting some good news.

Original poster

bonkerz · 23/04/2010 21:20

well DS has had 2 doses now. I dont know how much is due to the meds to be honest but he got dressed this morning very well, was ready in 20 mins when it normally takes 45 mins minimum. he has had a calm day at school too. DH also said that ds was very chatty tonight and not in his normal manic way, dh said he actually had a decent chat with him tonight!

hnot sure about side effects but DS was absolutely shattered last night and tonight about 2 hours after taking meds. He also said he had a blocked nose last night but it went by lunchtime and he says he feels bunged up tonight........he isnt poorly.....could this be a side effect? his little heart was racing earlier too adn he did get warm but seems fine now.

OP posts:

hollyhobby · 23/04/2010 22:27

Not the same thing I know, but dh, obviously an adult, takes this for paranoid delusions. It has been a lifesaver for our family. He did complain of drowsiness when put on it first but hasn't complained about it in a while. And he has stopped accusing me of sleeping with all the neighbours, which is a relief! I feel that I have gotten back the dh I married and love and there have been no odd or strange behaviours as a result of the drug.

Again, not the same reason for taking it but I am a big fan!

PipinJo · 24/04/2010 15:08

This reply has been deleted

Message withdrawn at poster's request.

Original poster

bonkerz · 24/04/2010 15:14

it is the cahms psych that has prescribed this pipinjo. he said that in large doses it treats psychosis and is licensed here for adults but is unliscensed in smaller doses but research has shown in small doses (and they are very small ie 0.25 and 0.5ml) it treats the anxiety and the lack of control of emotions which cause the aggression.

Certainly the case today. We have not changed a thing and dh and i have both identified 3 points today which would have normally resulted in a meltdown and conflist with ds but instead he has been calm, very chatty and tolerant. Not sure if its the meds or not but we have changed nothing else!

OP posts:

Original poster

bonkerz · 24/04/2010 15:14

he has had a dose this morning and last night.

OP posts:

PipinJo · 24/04/2010 15:34

This reply has been deleted

Message withdrawn at poster's request.

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