Autism and Risperdal

[disneygal66]

Our psychiatrist just prescribed risperdal for our DS6 who is autistic. He said it may help with the outbursts and irritability etc. Does anyone have any advice or heard anything about this? I know that this has only been FDA approved for autistic kids since October. I am very nervous about meds but if they will give him some peace (and us), then I am willing to try. Any thoughts?

Thank you in advance!
Mary

 

[twirlbird]

I don't know if this will help or not but I am currently on Risperdol M-tabs. I have Aspergers. I can't find anything different than not being on it to be personal. One thing I hate about it is the fact that it causes me to be sore. Thats its may side effect, which the doc prescribe me Cogentin to help with that. I was told to watch out for incredible stiffness/soreness and high fever as this needs to be treated immediately at the hospital. Hope that little bit helps

 

[cymomtx]

My daughter takes Geodon which is in the same family, and has for 2+ years and it helps with language process and her sleeping patterns. I would not take her off of it for nothing.

 

[DisneyDreams4P&B]

I am the mother of 2 sons with varying degrees of ASD, our 7 year old (High functioning autistic) was put on Risperdal at the end of last May and I cannot begin to tell you about the success we have had with it. His stimming has gone way down and he is able to focus more. When he started school this year, his teacher (who had him last year as well) said he was a completely different child. My best friend who also has a son the same age with the same diagnosis was a terror, his outbursts were legendary, she also put him on it and has found the same success. The beauty part of Risperdal is that it is still your child, not some drugged out version, I was very weary to put my son on because I didn't want him to be "zoned" out. Risperdal, for us, has allowed our son be himself while calming some of the things that have previously kept him more in the autistic world than in ours.

** Now please note** Your doctor may not tell you this but you have to keep them on a strict schedule with the drug. ine gets. .5mg 2 times a day and it has to be at the same time everyday for it to be used to it's maximum, so he gets it at 7am and 7 pm. Your child will also be very off their mark, if you miss a dose and it can take a day or 2 to get back into the normal routine. I did a lot of research before putting my child on it and talked to alot of other parents who empasized the importance of taking it at the same time and not missing a dose. You may also have to play around with the dosage level until you find one that works, like we both had to .

Hope this helps...

 

[marybrat]

My DD9 is on Respirdal and has been for 3 years. SHe doesn't have ASD, but Tourette Syndrome. From what I know of the drug, I can understand how it would be beneficial for a child/adult with ASD. It was very difficult for us to put DD on this meidcation, but now, we wouldn't take her off of it. She's a different child with this medication. I don't mean personality wise, I mean tic-wise. Before this med DD couldn't swim, ride a bike, or walk across the playground. Terrible whole-body tics. She still has very visible tics, but not disabling anymore.

Anyway, that's my $0.02

 

[daisyduck123]

Hi!

I don't have any children on Risperdal but I am a teacher who had a student who started on it mid-year last year. It was like a Godsend!! That's all I can say about it. After 16 years of teaching, I thought I could handle anything, but I was about to quit my job because last year was so difficult.

 

[Tissa]

My DS has been on it for 3 years now and it's been great. He used to get so angry in the car that he'd try and bust out the windows when he didn't like the song on the radio, also used to be very violent to his brother. He is just a much calmer happier boy now.

 

[cindy17]

This is a very interesting thread. I have a DS12 who is autistic and can, on a dime, turn into a very aggressive, destructive and angry child. I have heard a little about Risperdal and was curious about it. My son is currently on Prozac and it has been working well (I think!), but when he has these horrendous outbursts it makes me think if he should be on something else instead. Also, our neuro is no longer practicing and I have a pediatrician, but not a neuro. My ped. writes my scrips for the Prozac, but Risperdal is really out of her area of expertise. I cannot seem to find a neuro who "gets" my son. My question . . . is Risperdal only in pill form or is it available in a liquid? My son will not take pills. Thanks for any responses!

 

[tmli]

My DS took risperidol for over a year....at first we saw the same results as those here. Major side effect was weight gain...doubled his weight in less than a year. But we did notice an improvement in behaviours etc. After about 14 mths the med was no longer effective and also seemed to cause an increase in his anxiety and irritability. I decided to take him off all meds and he has been med free for over a year now. That of course could change tomorrow...we are not anti meds but at this time we feel there are more positives off the meds than on.

DS is 10 and has ASD and is Bi Polar.

 

[Tissa]

Cindy it comes in a liquid, my ds will not swallow pills either. He is also on Zoloft and Medtadate CD and those are all prescribed by a psychologist that deals with Autistic kids.

Yes one of the big side effects of Risperdal is weight gain. Ds is always hungry and has gained a few pounds but I just try and keep him active.

 

[cindy17]

Thanks for your responses I think I'm going to research this further. It's something I can at least consider, being that it comes in a liquid.

 

[Taratink]

My son age 7 has aspergers and his psychiatrist keeps pushing this med. I have said no to it many times. The weight gain and other side effects make me really nervous. It is nice to hear that so many of you have had good results with it. I will keep all of the positives in mind for the future. I have had my son on many meds. for the past year and a half and nothing works longer than 3 months. I want to give his little body a break and try some other alternatives, for now. I know that we all just want our kids to be happy and have a liitle peace in their lives. Good luck to you all.
Tara

 

[SueM in MN]

I know that this has only been FDA approved for autistic kids since October.

I just wanted to mention something about 'medication approval'. I'm a nurse and may not understand or be able to explain this as well as a doctor or pharmacist since I can't prescribe any drugs.
It is good to be cautious, but I want to assure you that having a drug only approved for autistic childen for a short while doesn't necessarily mean it has only been used for a short while.

Each drug in the US has specific things/conditions it is approved to treat. These are the things that the drug manufacturer has done scientific studies to prove that the drug is both safe and effective for. The drug manufacturer decides which conditions to do/submit studies on to the FDA.
Once the manufacturer has enough studies to prove to the FDA that it is safe and effective for that thing/condition, that can be listed as an 'indication for use' that it is approved for. When the drug is used for one of the listed 'indications for use', using it for that condition is called an 'on label use.' Because most drug studies start out on adults, drugs are usually approved first for use on adults and the drug is advertised for those uses. Use/studies with children usually come after the drug has been approved for adults for a while. Depending on the condition, drug and whether or not the manufacturer decides to pursue approval, it may never be actually approved for use with children.

After it has been in use for a while, doctors start using it for similar conditions (that is called 'off label use'), because, even though they might be very similar, they are not the exact condition the drug is approved to treat. The manufacturer may decide not to do studies to get that condition listed as an indication (drug studies are expensive and it may not be cost effective to do).
As some people mentioned here, their children were on the drug before it was officially 'approved' for that use in children. That frequently happens, as doctors see studies (often not done by the drug companies) or talk with their peers about use in different ages and different conditions.
That happened with one of the drugs my DD is on; there were some studies of using the drug for some children/adults with cerebral palsy who had shakiness or muscle tremors. One of her doctors read the studies and suggested we try the medication, which was helpful to her. The only approved indication for the medication is Parkinson's disease. I don't see that they will ever go thru the hoops to approve it for other conditions (too few to really study well) or to get it approved for children (not many kids out there with Parkinson's).
She is also on Lamictal, used for seizures. Even though when she started it, it was approved for use with children, it was approved as a medication to use with other anti-seizure medications, not all by itself. It has since been approved as monotherapy (a drug used alone) for seizures, but for many years, she was using it 'off-label'.

Anyway, I just wanted to assure you that 'just recently approved' doesn't necessarily mean it hasn't been used for a while for that condition/age group.

 

[SAGE]

My autistic son is on a combination of drugs. Risperodal, Paxil and Propranolol. Unfortunately, sometimes a trial of a drug is necessary to find out what works best.

Good luck.

 

[LorlovesStitch]

My 6 year old DD has a "generalized anxiety disorder, not otherwise specified". Her psychiatrist put her on Risperdal last spring. I was a bit reluctant at first, but it has been great for her. We have had a little trouble getting the dose right, but so far, so good...we are right now in the middle of adjusting the dose.

It has helped her quite a bit with her pacing, and jumping and spinning, all things she does when she gets anxious (which is EXTREMELY frequently, and sometimes we cant even pinpoint what made her anxious in the first place). She seems to be able to hold herself together during Kindergarten (only a 3 hour school day), but we are concerned about next year (I know, we will cross that bridge when we come to it). We have not really had any problems with side effects, other than her being hungry all the time. She has not gained weight (other than normal) because I limit the types of snacks she can have when she is hungry (i.e. fruits, veggies, etc.). She is however, on the low side for weight (due to being a preemie), so it is not that much of an issue for us. All her other physical exams have been within normal limits since being on Risperdal. The only side effect that has been a bit bothersome, is a sensitivity to heat. She seems to get overheated quickly in the summer if she is not drinking a lot of water and taking rests in the shade. Of course, we are concerned how this will affect our planned trip to WDW in August! We will be working with the doctor on this. We are actually thinking about getting one of those Guest Assistance Passes (or whatever they are called ) in case we have to wait in lines with no sun protection. Does anyone out there think they would give us one for that?

Anyway, just thought I would put in my 2 cents about Risperdal. I am actually glad to hear that it is working for other families.

 

[stenickar]

My 10yo ds has been on Risperdal for over 3 years now. The risperdal has really helped with the anger outburst . The weight gain only lasted about 6-9 months, then he evened out. It also helped to regulate his sleep pattern. It used to take him anywhere from 1-4 hours to get to sleep. Now he is usually asleep within 20 minutes of getting in bed and sleeps all night .
The guest assistance pass can be used to wait in a shaded area.
Lori

 

[LorlovesStitch]

Stenickar,
Thanks for mentioning that we could use the GAC for waiting in a shaded area, that will be very handy in August, I wont worry about my DD so much! You mentioned that the Risperdal helps your son sleep......it actually helps my daughter with that too! We couldnt believe how quickly she could go to sleep when the dose was working! She would be up and down from her top bunk at least 10 times before she fell asleep, about 2 hours after going to bed. We actually starting noticing that she was outgrowing her last dose when this behavior started up again. Glad to hear it works for you, and has done so for three years!

 

[LauraAnn630]

My 11 year old neice is on risperdal and prozac. She is autistic. Seems to work well for her! Im so glad to hear others are benifiting from it.

 

[SueM in MN]

The guest assistance pass can be used to wait in a shaded area.
Lori

Stenickar,
Thanks for mentioning that we could use the GAC for waiting in a shaded area, that will be very handy in August, I wont worry about my DD so much!

If you haven't checked out the disABILITIES FAQs thread, you might want to. There is some GAC (Guest Assistance Card) information there that might be helpful.

Also, most of the lines are actually fairly well shaded. If you want some "portable shade" to bring with you when you are not in lines/inside, you might want to consider renting a park stroller for her. Here's a picture from allearsnet.com of a single stroller from MK:

Many people have posted in the past that their children with autism really like these strollers. They are made of a firm plastic (like Little Tykes products are made of) and the sunshade and high sides seem to be very popular. For older/larger kids, many people rent a double stroller.

 

[JEZE]

Hi! New here! Following suit--I have an autistic son. He is now 8. He has been on respirdal for several years now. Have really seen some great progress with staying calm and also going to sleep.

I like the idea of that stroller posted. I will look into this. We are planning a trip for May. I also have a 5 year old daughter. But my son has a hard time walking for long lengths. I was thinking of bringing an umbrella stroller-but he would be to big.

Thanks!