Risperidone? Helpful or not? if so, how so?

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There are people on this site who know far more about Asperger syndrome than most, even many professionals. There are whole characteristics and traits of AS (such as hyperstimulation, shutdown and meltdown) that are not in the diagnostic criteria, and are poorly understood by the "experts", many of whom still persist in drawing parallels with tantrums, which are a different phenomenon.

That is not what I am questioning. What I am questioning is the assumption that if you take a drug, and then you feel better, it was the drug that made you feel better, or if you eat a food and you feel bad, then it was the food that made you feel bad, even if you suddenly feel better after you stop taking that food.

In the case of Respiridone, the studies do not show improvement in anything beyond irritability, and that is most likely because it's another one of those drugs that shuts down higher functioning.

If there were plenty of anecdotal evidence that it did have an effect, I would be the first to call for a trial - which is what happened with the vaccine fiasco. The trials were done. The vaccines were found not to cause autism. The pseudoscience keeps being repeated.

In the case of Respiridone, the trials were done, and no effect was found beyond irritability (see here http://www.drugs.com/monograph/risperidone.html (referenced)). This is not absence of evidence. It is evidence of absence.

The same applies with much of the evidence on things like milk and refined sugar. They are not good for you, and they are particularly bad for some individuals, but sometimes that badness is overstated.

Very true. Sometimes the two things, due to their proximity in time, appear to have a relationship when they do not.

Although sometimes, the drug did make you feel better or the food did make you feel bad. And sometimes, we don't know why. It just is.

Listen, if you have a system that is predisposed to being overwhelmed by stimuli that most systems can process efficiently, and a condition that is well known to be exacerbated under physiologically, mentally,, or emotionally stressful circumstances, it stands to reason that introducing something that causes one to feel ill or to experience discomfort (casein, sugar, chemical additives, etc), will cause an exacerbation of symptomology.

I am not claiming that my daughter's neurology was caused by casein, or that casein made her "autism" worse or that removing it made her "autism" better. Her wiring is her wiring. However, removing casein did provide her with symptomatic relief, which reduced the noxious stimuli she had to deal with, which allowed her to engage with her environment more.

The fact that there is no research that demonstrates this is not surprising in the least. They lump all "autistics" together. They treat autism as though it is a homogenous group, despite the fact that there is significant evidence to the contrary. So, if only 5% of people with "autism" have the type of autism that is influenced by casein, you are never going to find it in research, because 95% of the subjects will have no effect. They will wash the data of the 5% out, and then people who are invested in "proving" that autism apparently has no "cause" other than genes, will loudly tout the experiment as their "proof," when, indeed, nothing has been proven. Meanwhile that 5% of the population that might be helped by a particular intervention is misled to believe there is nothing they can do or they are chastised by people who claim superior intelligence/reasoning/analytical skills as being simple-minded and naive when they say that they have found something that helps. Or they liken them to someone who does not understand that the earth revolves around the sun.

It's bad science to insist that lack of results as demonstrated by research is proof of anything, especially in an area in which we cannot yet reliably identify members of our control and experimental groups, or who doesn't even belong in the experiment at all. Until we can reliably distinguish between the "subtypes" of autism so we know who to include and exclude from the study, we will find no results.

Likewise, just because something doesn't contribute to everyone's autism, it doesn't mean it contributes to no one's autism.

This is a s**t drug, it will turn his head to s**t.

He will become a s**thead.

Three year old boys are supposed to be boisterous. Try controlling him yourself instead of drugging him up. He's still a baby.

InThisTogether

I think you have half a good argument there.

Let's start with the good part of the argument. Your daughter has autism. Your daughter also has an allergy to at least one protein in milk, which causes discomfort.

Now, if a child has an allergy to a milk protein, then it is entirely reasonable to remove milk from the diet of the child, whether that child is autistic or otherwise. That is simply good childcare. In the case of a child who is also autistic, that child is also likely to achieve some relief from the stimuli that increase the likelihood of self-injurious behaviour, shutdown or meltdown.

What it is not rational to extrapolate to is to suggest that this may apply to any autistic child. It is only rational to extrapolate to other autistic children who have intolerances or allergies to foodstuffs or other substances in the child's environment. There is a higher incidence of such intolerances among autistics, so it is reasonable to discuss the possibility with your child's doctor. That said, by no means all autistics have such intolerances - some do, and perhaps more do than the general population, but many, perhaps most, do not. This goes back to your legitimate point about autistic heterogeneity.

What it is not logical to do is withdraw foodstuffs willy-nilly, as you seem to be advocating. This has nothing to do with autism, and everything to do with the incidence of allergenic substances in the diet and wider environment.

It is also not helpful to take a pile of anecdotal data of the order of "I took gluten/milk/all signs of protein out of my child's diet and he stopped running around" and generalise that to the entire autistic population.

I think there may be cause for research into enhanced hesitance to try new foodstuffs in the BAP: it may be adaptive.

It has also done nothing to cure, even treat the autism. The observed symptoms are likely to return as soon as other stimuli overwhelm the child's ability to cope. It has just removed one set of adverse stimuli - which is a good thing, but not a solution.

This simply underscores the need to address the problem systematically. Going back to the case in point, perhaps an examination of the possibility that something in the diet might be causing the child discomfort might make more sense than drugging. In this case, this might be part of a programme to reduce other adverse stimuli in the environment.

Why, thank you.



I have absolutely no idea if it applies to the OP's child or not. And I am a firm believer that this sort of "treatment" will only work on children like my daughter. I offer it as a possibility because I do not know whether or not this particular child is similar to my daughter. That is up to the parent to research and determine. I am absolutely unclear where you got the idea that I have suggested that this will work with "any" autistic child, particularly when I firmly believe it will not work with just "any" autistic child. You are reading things into my arguments to suit your own agenda (I think) which is to accuse any parent who suggests any kind of remedy that is not backed with scientific certainty of selling snake oil.



I did not intend to advocate that, so please point me to where I suggested that parents of autists should start withdrawing food willy-nilly from their kids, because I'd like to to make sure I never advocate that again.



AGain, please point out where I advocating generalizing this to the entire autistic population. I'd like to make sure I never do that again.



I believe I said that when I indicated that casein did not cause her neurology, nor did removing it change her neurology. It merely removed a noxious stimuli which gave her bandwidth to be able to engage with her environment.



Agreed. Where you are erring, Nial, is to automatically lump me in with people you clearly have disdain for. Not everyone approaches things in a "nilly-willy" way, or without systematic thought and analysis. Not all parents and NTs are blind sheep who hear one sound bite and jump on some kind of wagon. The danger with what you are doing is instead of having a more rational discussion about your reservations (as I believe we have done somewhat), you appear to just randomly attack people's experience and opinions, without first finding out whether or not they have merit. The end result of this, from a parent's point of view, is that they tune you out and turn you off, without listening to valid points you may have. I have seen it more than once (not with you, but with other adult autists who are trying to impart knowledge to parents). You appear as blind and thoughtless to them in spouting off your "lack of empirical evidence" monologues as they appear to you when they discuss things that have worked for their children.

I appreciate, and believe, that your intent is a good one. You see many people making decisions about their children without doing due diligence in researching the options, alternatives, and consequences. I am fully onboard with you there. I have always been a strong advocate of people gathering the facts (both those in support of their initial view and in opposition to it), examining their child, seeking outside help when necessary, and THEN deciding what to do. But when you make the assumption that everyone who disagrees with your personal opinion (which I do believe is based on rational thought and research), is irrational, of inferior intellect, and could not reason their way out of a wet paper bag or understand any "real" research (hence the need for the dumbed-down stuff), you come off as pompous and arrogant, and you may miss the opportunity to help someone see the "other side" of the situation.

What I am saying is that you have valid points, but the people who I think are likely your target audience will often not listen to what you are saying because of the manner in which you approach the topic. Don't assume that the person you are speaking to is not your intellectual equal (or at least that they can't hold their own) and don't assume that they did not research the topic extensively. If I tell you I have logged enough hours studying autism over the past 6 years to get a graduate degree, I am not kidding. I have spent more time researching it and studying it than I ever did to get my actual graduate degree. Granted, I realize not all parents are like me, but I can promise you an impressive percentage of the ones that I have met are. Treat them as your intellectual equal until you have sound evidence to do otherwise, and give them the benefit of a the doubt that they are more familiar with their child's individual case of autism than you will ever be, and you will probably find yourself having more meaningful conversations with more people that actually result in the mutual exchange of information and knowledge.

Rest assured, I have... There are a lot of sources, but none of them come to the same conclusions and there are none (that I have found) that present a repeatable (NOTE: IN THIS CASE, REPEATABLE MEANS HAS BEEN REPEATED. And there have not been further studies in any of the sources or papers I have seen)... and still many others that contradict the findings of the neurological differences, and still others that disagree on what possible differences there are.

Until there is a consensus... the sources are not reliable...

I agree that there are neurological differences... I am trying to get myself subjected to High Definition Fiber Tracking at this point. The big thing is HDFT reveals several different pathologies... As a result, we can state that there are differences, but not what they are... yet... HDFT may well reveal that there are separate neurological pathologies inherent to autism and lead to multiple diagnostics and branches of the condition...

Wow. Meltdown City.

COOL IT!!

I've had some personal experience with the drug in question. Months of it.

It started out being prescribed to "calm me down so no one else had to be bothered with my depression."

At about 2mg per day:

Within the first 24 hours, I started sleeping more than three-quarters of the time. I had pronounced flattening of affect (didn't feel anything or care about anything any more). Benefits: Even if I was thinking horrible thoughts, I didn't actually feel any emotional pain. I could be thinking about killing myself, and if someone asked me how I was doing, I could answer, "Fine, thanks. And you?" And mean it.

Within the first week, I started suffering from SEVERE large-muscle pain. Things I could do only slowly: get out of bed or up from a chair, dress myself, tie my own shoes (because I had to bend and move my shoulders). Things I could not do: Walk more than a few yards at a time, pick up my kids, clean house. It got worse over the months, to the point that I would have to slide off the couch and crawl to the bathroom, or else "walk" by picking one leg up with a hand and dragging the other one behind, holding onto something to keep from falling down all the while. Apparently there is a drug called Cogentin that can help with this-- but you gotta wonder if it's worth it.

Within the first two weeks, I started suffering cognitive impairment. It started with not noticing things (like my toddler playing with a jump rope by wrapping it around herself, or a turn that I was watching for) and got progressively worse, to the point that I couldn't articulate a thought, make simple choices, or fix anything more complicated than cold cereal if I did manage to haul myself into the kitchen. I've been OFF the crap for almost three years now, and I STILL have "senior moments" that I never had before I took it. I don't know if my cognitive function is permanently impaired, or if that's a product of having four kids.

Toward the end of it, I started having paranoid delusions and completely unprovocated rages. I would refuse to go outside, even when my husband offered to do things like take us out to dinner (even if he had to practically carry me into the restaurant), because I was convinced that people would be able to telepathically see that I was a freak and would try to harm us. Good news: The delusions went away within days of getting off the drug. Bad news: They were a major contributing factor to a severe case of agoraphobia that sometimes STILL makes it hard for me to function. I THINK the rages came from the fact that I could still think (at least, when I was awake) but lost the ability to articulate ANY of it in a manner coherent enough for communication. I THINK. It might be another sign of permanent damage, though, because I'm STILL more prone to meltdowns and shutdowns than I used to be before. I have it under control-- I can go someplace quiet and get myself settled down within about 10 minutes, and I can get out of the situation before I say or do anything harmful at least where my kids are concerned-- but I have to work A LOT harder at it than I used to, and it takes less to set it off.

As I understand it, I had an EXTREMELY, EXCEPTIONALLY bad reaction, and I probably have a case for malpractice against the people that kept demanding that I take it and take more of it when I made repeated attempts to self-report side effects in the early stages of the mess (they ignored me-- to them, my condition meant that I could not possibly speak for myself with any degree of reliability).

If you really think this stuff is necessary, watch for:

1) Loss of interest in things your child used to enjoy. Apathy, indifference.

2) Sleeping a lot. It might be normal at first, but if it doesn't go away in short order, it's a serious bad reaction. A strung-out kid might not act out, but a strung-out kid also can't learn.

3) Excessive appetite (CONSTANT hunger-- this isn't just whining for treats-- this is, like, vomiting because the stomach is overfilled and still sobbing 'I'm HUNGRY!!' I'm watching this happen to my grandmother on this drug now, and the dipshit doctor still won't give her a different medication).

4) Excessive weight gain despite not being permitted to eat any extra. It can mess with metabolism, too. Also check blood sugar daily and have lipids checked every few weeks, as often as the doctor will consent to.

5) Complaints of pain. I'm not exactly sure how a spectrum three-year-old would complain, but be EXTREMELY alert to this. Look, I've had some pain in my life-- toothaches, protracted labor, sciatica, other things I won't discuss here. NONE of it even BEGINS to compare to the pain I was in on that drug. ALL OF IT PUT TOGETHER probably doesn't begin to compare to the pain I was in on that drug. THIS IS NOT A JOKE!! !!

6) Loss of skills previously acquired. Disorientation, aphasia (loss of speech), alexithymia (losing whatever ability to verbalize feelings might have existed), loss of processing speed, complaint behavior with a sense that "the lights are on but nobody's home".

Personally, I'd try benzodiazepines, antidepressives, antihypertensives, and just about anything else I could think of before I resorted to Risperdal (or anything else in that drug class). I've seen them hurt a lot more people than I've seen them help, and it's SO HARD to tell what's going on in a three-year-old's head anyway.

YOU ARE NOT A sh***y PARENT. You were following advice given-- probably with many reassurances-- by someone you trusted. The shame isn't that you complied-- the shame is that these drugs (which were developed to treat violent psychosis and then sold for everything else because they didn't work any better than older antipsychotics) are being pitched as "miracle pills" for everything from autism to dementia to depression to ADHD. Seriously-- despite a black-box warning, it's being stuffed down my grandma's throat for dementia-related psychosis. They tried to kill me with it for depression and Asperger's. My cousin ended up moving in with her mother, almost losing her kids, and going through MONTHS of "hillbilly rehab" (having Mommy teach her how to be alive again) because of Abilify and Zyprexa. I just had a conversation with my MIL's neighbor this evening-- she's asking for advice based on my experience, because her depressed daughter went from "sad and blue over a failed engagement" to "unable to care for herself and suicidal" after six weeks on Zyprexa.

It's fashionable to throw them at everything these days. The damn doctors don't understand the drugs they're prescribing. As far as Risperdal goes, boys growing woman boobs isn't the worst of it...

...but the drug industry reps make a convincing enough sale that the docs think what they're doing is OK...

...and they then say it with enough assurance that patients accept it...

...and they're not exactly friendly to being questioned about it, either.

I wouldn't just recommend stopping the drug.

I'd want to ask you some questions about how much the doc talked with you before prescribing it, and what you were told to expect from it...

...and then, depending on your answers to that, I might recommend ditching the doctor along with the Risperdal.

How is a spirited debate on a sensitive topic Meltdown City? I would appreciate not being told to cool down, when we are not in need of cooling... Especially since last post was 3 days ago