Risperdol

[Angus]

 

just thought I would give an update on John (10yr - see post above Nov 18).

 

He's been taking his respiridone prescription for 6 days now. We are touching wood, but the effect has been noticeable and positive. After a couple of days, when there was no change, he just mellowed out. Still a very strong minded person who knows what he wants to do and has limited time for anything else. But his attitude has improved markedly. his key worker is being treated as a friend (bought her a pressy) rather than bearing the brunt of his aggression at school. Having been excluded from the playground (in the interests of other children apparently) he has now been let back out and was well behaved , treating teachers and fellow pupils with respect.

 

At home, its moved from FO you are the worst f...ing parent in the world, i wish you would die., to Daddy can we spend some more quality time together.

 

As parents we've found some time to de-stress and enjoy being a family again, much better than the relentless vitriol we dealt with in the past.

 

Now its only been six days and we have to take things as they come - but I'm glad we took the decison to try the medication route after many years of it being an anathema to us.

 

 

Long may the change in John continue, at last he seems to be able to move forward rather than being caught in an viscious circle of frustration, anger and sadness.

 

Angus

Edited December 5, 2004 by Angus

[Carol]

That is great news Angus - we were very reluctant too to take the medication route - but like yourself we have found it to be a very positive thing - long may it continue.

 

Carol

[kirstie]

Angus,

That's really great, i am really glad things are working out.

I'm also glad for you're boy, i feel it so much for them and the turmoil in their little minds.

Here's to you and yours!

Take care, Kirstie.

[mbrown]

Hello Everyone, That's great news about your son Angus. I'm glad that the risperdal seems to be helping. I knew that if i tdid work you would all benefit from it. Our David still has his 'off' days but I have to be honest and say that these are not as extreme as before and we can get him out of any bad moods quite quickly.

 

We have increased the dose slightly to .75mg once a day. the effects seemed to be wearing off as the afternoon progressed, more to do with tiredness, thirst/hunger than anything else, iI think.

 

Kirstie, Have you tried to use dietary intervention or dietary supplements for Lewis?

 

I know many people whose children have benefitted from adopting special diets, such as gluten free or dairy free, or both. Sugar free drinks do no favours either. Sugary fizzy drinks too should be avoided.

 

The use of supplements such as epa fish oils or l carnosine capsules can have a dramatic effect on a childs behaviour. The fish oils , one named eye-q come in capsules or liquid form.

 

Personally, I found the gluten free diet hard to follow. We found that all Davids favourite foods contained it. It was difficult for us to get him off his usual foods onto foods that take a bit o fgetting used to. We have stuck with it fo r 9 months now - it has to be done strictly for a few months for any effect to take place.

 

Certain e-number additives can also have a very bad effect on our children.

 

Anyway, I thought I would just run that by you.

 

Good luck to you all and if I don't manage to get back in soon, have a very marry christmas (or as near as possible, lol)

Mike

[kirstie]

Hi Mike,

I haven't tried the gluten/casein free diet yet. It seems i'd be doing a lot of caking and baking and i wonder if i could do it, (without poisoning us all! ) It is something i have thought about although haven't tried.

Lewis eats hardly anything so i wonder if he would eat any of it anyway. I guess it really is worth a try. What are the symptoms of the intolerances for gluten and casein?

I do my utmost to ensure theres no colours and additives, no fizzy juice etc and no smarties etc.

Would you believe this, we were visiting Language and Communication Units within mainstream schools recently and they have a behaviour system in place there. Basically 5 smiley faces = A SMARTIE seems a bit of an odd one to me!

Kirstie.

[Elanor]

Hi Mike

 

I'm really glad to hear things are going well. Have you tried altering the time of day when your son takes his medicine? We used to dose our son after school, but then found that if he took the medicine with breakfast, he'd get the full benefit after school when he really needed it . Or perhaps splitting the dose into part in the morning and part after school?

 

Merry Christmas to you too (only 2 weeks to go - and I've barely started! )

[mbrown]

Hi Kirstie, Following a GF diet is supposed to improve bowel problems. It is also supposed to have a marked effect on the behaviour of kids with AS and ASDs.

 

We started the diet around 9 months ago. I noticed a dramatic difference. Our lad was far more talkative and communicative. This may have been more to do with what was left in his diet rather than what was omitted.

 

The diet is very hard to follow, particularly if the child is a fussy eater with a limited diet to start with.

 

It can take months for gluten to leave the system.

 

I can't find the links at the moment but there are tests that can be done to determine allergies and intolerances to a number of foods. You may need to research this. some of these tests can be expensive but I a m not sure. Dr Paul Shattock is an expert on diet and ASDs he works out of Sunderland University and he travels the country giving talks on the subject. I think his department do tests. You could find out more about him from the Uni site or do a general search on his name. I'm sure many people on this site will have heard of him and will have better info than me.

 

Good luck with the diet if you go that way.

 

Elanor, We give David his dose at breakfast time. We haven't yet found the need to dose him after school. Splitting the current dose of .5 to .75 mg might not be sufficient to carry him through the school day.

 

Mike

[Carol]

My lad had 0.5 in the morning & the same at night- he is still having problems at school & they are starting to escalate again :( - he trashed a classroom the other day & is being very intimidating and threatening. his doc at the C&FP is talking about increasing his dose again - but he is overweight already & am finding it really hard to get him to eat healthy food ( very limited diet of course) and he does not like going outside so is not receptive to doing exercise or even just walking about.

 

I have a meeting to see about him attending some anxiety management and stress release classes on Tuesday - and on Wednesday have a meeting at the school with head of unit, ed psy & social work.

 

I am very reluctant to up the dose but don't know if this will help him - or just make him more tired & hungry - although his anxiety levels have in the whole reduced dramatically since taking the rispiradol - I have always been so against the idea of meds - especially as (to me) the anxiety is a manifestation of the problems he is having "conforming" & coping with school - is the answer really to just make him more drugged up - but if on the other hand adjusting the dose a bit might make the situation tolerable for him. It is such a big decision & responsibility & I don't want to let my lad down but don't know what to do for the best.

 

Carol

[mbrown]

Hi Carol, I understand your reluctance to up the dose and that you don't want your boy 'drugged' up. You're waiting for the 'BUT' , but there isnt one.

 

Is the 2nd dose late at night say around bedtime or sort of straight after school. If it is later and to help him sleep, have you thought of using melatonin to aid sleep?? There are no adverse side effecta of this. It isn't a drug. It will not interfere with the risperdal at all.

 

If you use melatonin at night instead of th erisperdal I'm sure you could increase the dose at the beginning of the day. An increase from .5 to .75mg is not considered to be too great. I know of children that are on 3.0 or more.

 

 

The use of drugs should not mean that any dietary or behavioural therapy be abandoned. It should be used in conjunction.

 

The thing that sticks out from your message to me is the bit where you are concerned about the anxiety experienced by trying to 'conform' with what is expected at school.

 

The whole point about our kids and school is that they can't conform and it is the school that is to change to suit your boy. By change I mean adopt the correct strategies to help your lad get through the education system. It is certainly not

the jobe of the school to just get your boy to conform!

 

I'm not saying that our childrens behaviour cannot be managed but it is almost always on their terms and no one elses.

 

I hope that your meeting goes well, but remember to point out that your boys anxiety management must be helped by a reciprocal approach by the school to try to eliminate stressful situations , allow him his own space, let him choose his own time outs when under stress and not just when the teacher is stressed.

 

At my son's school they let him follow an amended curriculum where he decides what and when to do his work. He does the same as everyone else but he gets to choose in a fashion ho whe does it. There are times he is even allowed to go to a free room to do his work if he feels the general hubub of the classroom is getting too much.

 

Sorry to ramble on a bit. Good luck again with your meetings and I hope you can reach a satisfactory outcome.

Mike

[Carol]

Thanks Mike - great suggestion you gave me - yes the night time one is to help him sleep & that would be a good idea - it would mean he would have a bit help for the school period and not increasing the overall dose - I will speak to the doc about it on Tuesday.

 

My lad is in the autistic unit at the local high school & they are trying hard - they have cut out all his mainstream classes, stopped all the classes within the unit that he was having problems with and at the moment for the short time he is in school he is sometimes just doing one lesson - where the maths teacher comes down from mainstream to teach him and the rest of the time he is playing on his gameboy - we keep trying to up the amount of work he is doing at school - but it is like 1 step forward & 2 back - the meeting on Wednesday is (I suspect) to review the (lack of) progress and scratch our heads again trying to work out where the problems are coming from and how they can be minimised.

 

thanks again for the great suggestion - good idea

 

Carol

[mbrown]

Hello Carol, Thanks for your reply. You have given me a bit more of an insight into your sons problems. My Lad is just 10 now and we are just starting the process of finding a suitable high school for him. The one that we think we might go for also has a special unit within the school. It too enables pupils to be taught within the unit if required but the pupils can go into the mainstream classes if they want.

 

I would be very interested to learn how the unit at your boy's school operates.

 

It's a shame that your boy hasn't been able to take up more lessons so far. Does he have any other hobbies or interests other than game boy that might be used to adapt lessons around?

 

Here is a pretty simplistic example of that approach being used with our lad. He is very much into Scooby Doo just now and when the class were doing a project on historic clothing he was encouraged to do his work by 'dressing' up the characters from the cartoon in the clothes being looked at. This kept him on track and helped him take part in a lesson he might otherwise have 'opted out' of.

 

Is there any way of using the playing of the Gameboy as a reward for work done rather than being able to play it without doing anything for it? Or, would the threat to withold the Gameboy be a big mistake??

 

I obviously don't know what your school has tried. Would a 'Buddy' or Mentor help? shorter lessons? BBC schools progs?? I will be looking into that one. The BBC do a great number of 'learning zone' progs of around 20mins at a time. They pack quite a bit into a short period and make most subjects quite interesting. Could the school use these or other TV/monitor based lessons?? How about doing work on a computer. There are many software progs around for all subjects.

 

Do you think that this approach may help your boy??

 

 

Good luck with your meeting at school. Good luck too with the doctor. If it is a GP I don't know if he can prescribe melatonin for you. A paediatric consultant can do so. You can buy it freely online, although you would have to look around for a site.

 

I'm no expert but I believe that taking melatonin would not have any adverse effect with any other medication. It isn't a drug as such but a supplement of something that already occurs naturally in our brains to help induce sleep.

 

I look forward to hearing how you get on. Oh, just as a matter of interest , because of the differences around the country, what country of the UK (assuming it is the UK) or LEA are you in? I am in Scotland so the education authority may be different from other parts of the UK.

 

Mike

[Carol]

Thanks Mike

 

We are in Scotland too, (West Lothian) and the autistic unit & learning support base is quite large - they have a group of classrooms in a quiet part of the school. Unfortunately the unit itself is not always quiet ( as you can imagine lol) and as usual the staff try hard but are often understaffed and stretched thin trying to answer everyones needs

 

The gameboy is just a coping mechanism - at home he does not really use it - he is more into games like Halo, Sim City 4 & sprawling world conquering games - so the game boy is often just sophisticated blu tac or pipe cleaners lol.

 

Ah - just had a bit of insight whilst typing this - I think the resistance to the work could perhaps come from the gaps in his education ( we keep revisiting this but sometimes the problem is right under your nose - he spent a lot of his primary time under desks & outside head teachers office - so it is really hard to see where the gaps are - therefore difficult to pinpoint and help him "catch up" - the ed psy feels strongly that I should not worry about him not doing the school work as (simply put) in the long run qualifications don't matter if he would not be able to manage to hold a job down due to lack of skills in more tangible areas.

 

As she says he has a brain & that is not going to stop working - but I feel time is marching on & he only has a finite time before he is no longer in the school system. I keep asking about what stage he is at - & if I can buy software to use at home - but they want to keep the division of work & home seperate as they fear if I teach more n more at home it will end up me teaching him and he will "fall off" the system - my lad has indicated loads of times that he does not want to be home educated either - which is good as school is just about the only time he will leave the house aprt from coaxed trips to the local shopping centre.

 

It is the doc from the Child & Family Psy I am seeing on Tuesday so that is the doc I was meaning - so many of them involved - we have been flagged as "in crisis" so we are actually getting a quite quick response at the moment..

 

I will let you know how I get on tomorrow & Wednesday.

 

thanks

 

Carol

[smallworld]

am in agreement with the ed. psych. !! qualifications can be gained at a later date, I'm more bothered about my son learning daily living/social skills. He's only 4 but am already being badgered about his 'being unable to access the national b****y curriculum '!! I want him in school to gain from being with other kids, the learning can wait !

Qualifications can be done as a young adult when there are far more options/flexibility to learning.

[Angus]

 

Hi all,

 

to add some comments on risperdal dosage and timings, and also food intolerances.

 

The positive effect John was getting on 0.5 began to wear off after 2 weeks and we moved to 0.75, with 0.5 breakfast and 0.25 teatime. That seems to have restored the improvement John had felt (touches wood). Our doctor suggested we could up it to 0.5 + 0.5 if we wanted to and she would have no concern with that (subject to us monitoring john's reaction).

 

On food intolerance John had the tests and basicaaly is intolerant to just about all of them. We tried him on a gluten/sugar/dairy free diet. It did work for about 3 months but after that he/we couldnt keep it up as the menu was so limited and he didnt enjoy it at all.

 

Merry Christmas to everyone - may it be a peaceful one.

 

 

[barefoot wend]

Hello

 

Just to add to comments. My son (13) started Risperdal in Sept. We went, under instruction, from 1x0.5 to 3x0.5 in morning - consultant says he has some patients on 12x0.5!!!!

 

I do think that their is a build-up of tolerance over time but we cerainly hope to stick at current dosage. However, I'm not averse to occasional extra 0.5 dose pm if behaviour dictates as consultant suggested.

 

I certainly thinks it makes a positive difference but my son says that it just squashes all the badness out to last the whole day rather than him having flare-ups which seem to disappear quite quickly.

 

Think I feel a little guilty.

 

Barefoot

[westie]

Elenor/Noetic

Thanks for your replies re my son who is nearly 6 and has been diagnosed with PDA. I havent replied earlier as I havent been on pc for a while and when I last looked at this thread I only read later replies and missed the replies to my original question!

PDA isnt well known and we are finding it a struggle to find suitable strategies for behaviour management and are being passed from one place to another - the psychologist will not help us as they 'are not familiar with PDA' and has refered us back to a group who work with children and families of children with emotional and behavioural difficulties who have NO knowledge of PDA - we are waiting for a response from them. The school are also finding it difficult to get advice. We had an annual review (brought forward 6mths) on Dec 6th at which school said this was not best place for him really but in absence of any other school with better understanding of PDA (including special schools known to us in the area) it was most suitable school to keep him at....

So for now we can't get any advice on suitable medication as we just get passed from one person to another. We thought that a diagnosis means that someone will identify suitable advice/ treatments for a disorder but this isnt case for us. PDA isnt well known and understood outside Nottingham, and who knows how you get to speak to the experts there, let alone find a suitable school placement for him

[mbrown]

To Whom It May Concern,

 

I have just received a phone call from someone in my lea, informing me that they have been told that school reports regarding my son have appeared on the 'web'.

 

With the limited information I have been given I realise that the 'report' in question is actually a message that I posted on 24 Novermber 2004.

 

This post was regarding my son's behaviour at school before and after taking risperdol.

 

I was careful not to use my son's, school's or teacher's name. Incredibly someone from this site must have managed to work out all three from my post.

 

If the person was concerned about school reports being put online and was able to identify my son?, could that person not have contacted me about the matter?

 

If on the other hand reporting this report was an attempt to discredit the school or teacher I would like to set the record straight.

 

The 'report' was not an official educational report. It was a letter written on my behalf for my son's doctor. The teacher chose to write it in a report style. Perhaps I should have omitted the words 'report' and 'principal teacher ' in my message.

 

I posted it for the sole reason of informing other parents with concerns about the use of risperdol, my own experiences.

 

While I would say that I would not be happy if someone other than me posted personal information about my son on-line, I will continue to post any information on these boards that I think may help any other parent in his or her struggle to bring up their child.

 

I assume the person who knows me has am autistic child, being on the forum, so whoever you are feel free to contact me and maybe we can share tips on bringing up our children. If you are just into points scoring against th eschool or teacher, don't bother.

 

Mike

[007paul007]

Hi

Well medication where do I start , my son went through a really realy bad patch , I thought that at one stage I might snap and injure him and eventually broke down in tears.

He was getting frustrated , he was 15 at the time , had the shakes like you would get if you were getting frightened in any and he was put on ritalin, this made him wierd , he was also given menetonin ( sorry for spelling mistake) and he just sat there looking like a spaced out high as a kite person , who never laughed or smile no more.

I did some investigating into Ritalin and found out that in the US some parents were bring lawsuits against companies as it was either apart of Cocaine or some other hard drug . I took my son off it and yet he still had his bad behaviour , shakes and even the social workers found it hard when they came round to try and help, he escaped from one them and breaking free when they took him out for a walk.

My son was put on Respiridone shortly after and it went up to 1.5 mls in the evening and 1.0 ml in the morning , this calmed himapart the the shakes which would come and go and constantly i would tell the doctors about my concerns over the shakes.

My son had been on it for some months when it november last year , just after his 16th birthday , he had a fit and was shortly diagnosed with epilepsy after another 2 more fits.

It now seemed that my son with these shakes that he was having and which are comingly called tremors and are apart of epilepsy , was developing epilepsy and could feel something was wrong and hence because he could not tell us , his behaviour went up the wall.

We now have a new peadatrician and we have agreed to ween my son of the respiridone as a side effect is that it can cause fits and given to a child who is epileptic is not very wise .

So at least we are moving in the right direction , and hopefully the only medication he will be one would be for his epilepsy.

Edited July 5, 2005 by 007paul007

[Guest hallyscomet]

Hi,

 

I see you have zillions of posts here, apparently it is common for all As kids to need a medication change once they reach puberty, my son was taking Ritalin and Catapres with great results then once he was twelve it all stopped, the aggression you talk about, I though if I don't do something my daughter and I will end up in an institution.

 

My son still took the Ritalin AM then only Catapres/ 1/2 in PM to help him sleep,

but the Doctor Introduce RISPERDAL IT WAS A BLESSING!!!!

 

MY SON THANKED ME FOR SEEING THE DOCTOR AND PUTTING HIM ON THIS MEDICATION. HE SAID HE HAD NO MENTAL ENERGY TO TALK AND COMMUNICATE HE COULDN'T GET THE WORDS OUT SO RESORTED TO VIOLENCE.

 

He is now much calmer and has been able to make "good" friends and they are still his friends today and a lot of them are doing their final year in High School, my son had to pull out only because of the complications he had with the MMR boost, see my post in General disc. on the reaction he had.

 

All the best

Hailey

[lil_me]

If a GP gave me Risperdal/ Respiridone for my son I would throw it back at them.

 

My sister is now very ill due to this drug which has messed with her blood sugar levels and caused her (her doctors believe) to have a phantom pregnancy and her hormones have gone through the roof. Her doctors have apologised for giving her this drug, since she started taking it she has hated it, she said she can not be herself and doesn't know herself.

 

On further researching this drug has caused a lot of people to have been caused to have epilepsy, diabetes, strokes and heart attacks, one lady died at 30 because of a heart attack leaving 2 young children. I then spoke to Wendy Lawson at her conference who I had heard had been researching this drug. She actually said it now scares her that this is now available to prescribe for children with ADHD and ASD and that she hopes parents look into the evidence before making a decision for their child.

 

I am not saying this drug is not right for anyones child or to stop taking any meds, as parents we have the duty to decide what is best for our children.

[Guest hallyscomet]

Hi Lill me,

 

I would be interested to hear if this person had a Hep B injection before this happened with the Epilepsy. By the way Epilepsy can be a common trait with AS

so don't blame Risperdal entirely, as I know lots of parents that have used it and it has turned their childs lives around for the better.

 

I have a daughter that doesnt have asd and she developed epilepsy after the Hep /B injection.

 

Regards

Hailey

[lil_me]

In the cases where seizures have become present no further medical intervention was noted to cause this. These people had a mixture of disorders, very few were AS.

 

I am not doubting it turning lives around, and would never suggest someone stops taking any prescribed medication, what works for some doesn't for others, but find the research into it extremely concerning.

 

Also after my younger sisters experience (she does not have AS/ASD) I wouldn't go anywhere near it. Not just because of the medical side effects she has experienced but also the way she said it made her feel. She had involuntary movements (hands and face) and was extremely rigid in movement and said her whole body felt heavy. Since that post it has also been found that my sister now has a heart problem which she did not have before taking Risperdal aswell as now having extremely low blood pressure. Her consultant is concerned and has asked for permission to forward the information from her notes to one of the Medical boards, he said he has taken other patients off the drug.

 

I am not a medical proffesional and would not comment on a persons choice on what they believe is OK for their children, I know parents don't make these decisions lightly. This is my personal opinion based on research following my experiences with it. I know it was found via survey that a high percentage of parents reported this medication has helped/changed lives, my concern is it has also changed some peoples lives forever which is why I would not accept it being prescribed for my son.

Edited November 11, 2005 by lil_me

[Guest hallyscomet]

Hi,

Lill me, I remember when my sons doctor put him on the medication he said he would monitor him for a while and told me to watch out for these types of side effects as it did affect some children this way especially ticks and the muscle movements, however, if none of those presented the medication was perfectly safe for my child. I also had second opinions and they were amazed and how much it helped my son to live a normal life, and integrate which he was incapable of doing before taking Risperdal, it gave him the gift of communication.

 

But I agree it is not safe for all children, needs to be monitored, all drugs do, for side effects as what works for one child doesn't necessarily work for another.

 

Regards

Hailey

[Guest hallyscomet]

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