I am beyond outraged about this: Prednisone and autism.

Standard

I am on Prednisone at the moment. I was looking up something about the side-effects of Prednisone, and somehow stumbled onto this long series of pages on Prednisone and autism. There are people actually trying to treat autism with Prednisone, trying to fund studies that will have lots of autistic children on Prednisone as well.

I understand that Prednisone has its uses. It is extremely useful for keeping me breathing at the moment during an asthma criss. My friend the Rettdevil is on it for adrenal failure inability to make cortisol. But asthma crises and adrenal failure and inability to make cortisol can kill you. In these situations, it is worth it to be on Prednisone, either short-term or long-term, even though it is a nasty, scary, and dangerous drug overall that has all kinds of effects that cause problems for people.

Okay, and despite the fact that I am in an asthma crisis at the moment, my doctors are still extremely concerned with keeping me on it for as short a time as possible. As short a time as possible is generally measured in weeks, unless something unforeseen happens. The website I just linked to is talking about keeping young autistic children on Prednisone for months at a time.

Prednisone is not something to be treated lightly. I hear a lot of people say “all drugs have side-effects”. This is true. Prednisone however has such drastic side-effects, because it’s a powerful steroid, that it really should be used to the minimum amount possible. The idea of giving it to autistic children for months at a time is reckless, dangerous, and foolhardy. I cannot believe people are doing this to autistic children, when there’s no way that Prednisone would even do anything for autistic children the way it does for asthmatics.

Prednisone suppresses the immune system leaving people highly vulnerable to infection, can trigger mania, insomnia, and hallucinations in people who are not even susceptible to them in the first place, can create total changes in personality and mood, an appetite that does not quit (and makes you feel like you’re starving even right after you eat), and in general messes with every system in the body it possibly can. It’s great for some purposes but I know almost nobody who likes being on it or thinks it’s a good drug to be on any more than absolutely necessary. Most people I know, who have taken Prednisone, if they know I’m on it, they sort of groan sympathetically. It’s not something people want to take and it’s not remotely safe.

And they are trying to test this in young autistic children. Because they can, apparently. I wish I knew some way to stop them.

Edited to add: Please don’t make this about “drugs” in general or “difficult decisions” or anything of the like. This is about Prednisone being described as something that can make autistic children talk. I really hope that if, say, someone started marketing chemotherapy at autistic children (who did not have cancer), there would be an outcry rather than various comments about how some parents choose to use “drugs” for their kids or something. Drugs are not a monolithic category and treating them as such confuses the issues rather than clarifies them.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

81 responses »

  1. Hi Amanda
    I do not know if you can be interested on some information from Teresa Binstock (somehow old but with several citations) and more recent of Prednisone- from pubmed. Please let me know therefore I can include here the links

  2. Hi There,
    I have developed the habit to read your blog quite often. As a mother of a child with autism and two with speech and language delays I want to thank you for all the work you have been doing to help people like me to better understand. You really opened my eyes, and confirm what I always felt true. Never judge a book by its cover.
    Thanks also for spearing this important issue with drugs. Although I never given any drugs to my children, I also see how some parents may consider it. The one you are blogging about sounds pretty scary, though.
    It is so difficult to strike a balance.

  3. This is one hundred percent horrible. Besides the other side effects, prednisone can stunt growth and wreak havoc on the bones, so it’s even worse for children than it is for adults.
    I take prednisone every so often because of Crohn’s disease. I was, in fact, on it for a couple of weeks last month. The special side effect it gives me is mania. However, this last time was the first time I’ve taken it since I identified myself as being autistic, and I spent a little time considering how pred. and autism mix. (I had enough time to do it, since I wasn’t getting to sleep until 3 AM every night:)) It occurred to me that the mania might be properly described as simulating or emulating AHDH–constantly shifting focus, etc. Which further suggests that prednisone might actually make autistic traits more prominent in these kids, not less.

  4. captain blog: This is not about “drugs” or “balances”, it’s about Prednisone. “Drugs” are not a lumped-together category that can be commented on with any degree of specificity. Specific drugs on the other hand are. It is very easy to cloud the issue by focusing on vague issues like “giving drugs to kids” which do not address the specifics of what specific drugs such as Prednisone do to people. It’s like people lump together stimulants, anti-convulsants, anti-depressants, neuroleptics, GnRH agonists, and corticosteroids here and think they’re talking about the same issue. They are not the same issue, unless the same issue is the fact that people don’t really seem to care what they put into autistic people’s bodies and will use us as guinea pigs for any and every drug no matter how far-fetched. But aside from that, there’s really no comparison between these various types of drugs and it is not really all that situation-appropriate to talk about “drugs” in any general sense when the issue is (in this case) that Prednisone is a highly dangerous drug, even more dangerous for children than adults, and it’s being given to autistic children “to make them talk” when there’s no evidence that it actually does so. Talking about “needing to strike a balance” and all that stuff just sort of diverts things into an inaccurate mental arena where all drugs are the same level of good and the same level of bad and parents just have to make assorted “hard choices” (or something of the sort) about them but any choice actually made is okay regardless of whether the drug is remotely appropriate or not. (I know that’s not what you meant necessarily, but it’s what usually happens when conversations on these sorts of topics go down that route.)

    Anyone reading this, please try focusing on what prednisone is, not vague ideas about whether you’d “try drugs” with your kids or not. I mean, this is sort of the equivalent in some ways of using chemotherapy on autistic children just because you can or something.

  5. Please don’t hate me… but we saw a definite difference with Joey on predisone. Yes, I had to control his food intake or he’s eat everything in sight, and he never seemed to feel tired, but yes, he did speak more, and in longer sentences, and even answered questions.

    However, I have filed this under “check for allergies” and “kinda like oxygen”. Joey was on predisone for croup, and had a definite improvement on the oxygen as well. I don’t see a single occurance as a reason to put him in (or in any way condone) HBOT. I don’t see this improvement on predisone to be a reason to put him permanently on predisone. It is a sign that we we may want to look into what the predisone was actually doing to Joey, and was it really helping him or not?

    I actually have spoken to our docs about this, because predisone is often taken for allergies- it reduces inflammation. It kept Joey’s larnyx from swelling very effectively. So the word is to not put him on weird meds, but figure out the real cause that the predisone impacted.

    I also want to add: Joey was NOT CURED on predisone. We had a notice-able improvement in speech. However, we also had a marked increase in tracking, spinning, and need for propioceptive input. So he could find words and use them better, but obviously other things were going haywire. It’s a drug. He may come back with zero allergies. Speaking isn’t the end-all be-all of goals, after all. Being able to speak better doesn’t mean this wasn’t harming him in other, more important, ways. We’re investigating. I’ll be telling what we find on my own blog.

    • I am currently trying to do the same thing. My son has chronic croup and Autism. During this current bout of croup/prednisone, ALL of his teachers and therapists noticed a HUGE, HUGE difference in him. They wanted to know what was different. I mentioned he was on prednisone. He is completely “on”. Its just amazing to witness such a signifigant improvement. I, like you, dont believe this is the cure all, but am trying to find out why, and what else I can do, to continue making improvements with my sons focus and speech, without harming him.

  6. I don’t talk any more on Prednisone, but I certainly can get more productive in certain areas. Probably for the same reason that it can induce mania, frankly — it puts me on overdrive, makes me feel like I can accomplish anything, etc. (Which is actually also why I try not to make major life decisions while on it.) My mom can apparently clean the house really well on Prednisone, same principle.

  7. My mom’s beagle was on Prednisone for extended periods of time for some vague neurological problem. They’d have her on it for weeks at a time and then give her breaks. This went on for a few years. I don’t know what it did for her but she was kind of wigged out either way. (she seemed to have a chronic equilibrium problem)
    I had an asthma attack with a bronchitis and was given a breathing treatment with Prednisone in it. I will never go to the hospital again for an asthma attack. That was the worst thing, it made me cough more, I had that wirey, insane feeling. I couldn’t think of anything but my heart palpitations and how I wanted it to end. I can’t stand anything stronger than coffee. Maybe I had too much or maybe I was too sick to feel any good mania effect.

  8. Well… the mania effect (when people get it, which isn’t always) isn’t necessarily good. A friend described it as starting out feeling good but then spiralling out of control really fast and almost spending her entire credit card before realizing something was very wrong.

  9. I’m on it because I don’t make cortisol and that’s a good way to end up 80some pounds, allergic to life itself (seriously, rashing at water is a bit much), oh, and dead. A whole whopping 5mg…your average adrenal failure patient takes 7.5mg, which is my stress dose.

    ALL the other ones make me evil. Like, forget my little circle, I am taking over hell evil. This includes the injection to keep me from DYING should I get injured…it’s also the equivalent of 4 days’ worth of cortisone allllll at once. There’s also so much monitoring it’s ridiculous…bone scans, electrolytes, liver and kidney function, I’ve had so many EEGs it’s not even funny (and the pred. has messed with both my seizures and my speech, and changed something about my movement as well), other monitoring tests that I’m SURE they aren’t doing for these kids. I see an endocrinologist for this. I bet they don’t.

    Besides which, studies have shown ad nauseum that autistic people who don’t have damaged adrenals or pituitaries put out an EXCESS of cortisol. Prednisone for the sake of prednisone is the last thing they need.

  10. Prednisone has been filed in my brain for ages under “DANGEROUS”, sometimes necessary, but DANGEROUS. I haven’t gone to look at the page you linked to. I think I’m afraid to. I suppose the parents are saying that if the kid goes into a coma that it’s a good sign, if his kidneys fail, it’s a good sign… you know healing regression and all.

    I so do not like steroids, they just scare me. Not that they shouldn’t ever be used, obviously.

  11. “Most people I know, who have taken Prednisone, if they know I’m on it, they sort of groan sympathetically.”

    I don’t think I’ve heard this described better. It has to be the most quintessential love/hate drug I’ve encountered. Life-(or quality thereof)-saving yes, for specific conditions (not autism). Dangerous for certain.

  12. Wow. The site you linked to has some really horrible pseudoscientific-sounding nonsense on it. Like this:

    What Prednisone Does

    The primary effect is to “unlock” the speech and language capacity in autistic children, both regressive (those who previously had some speech and then lost it), as well as those who never developed speech.

    Gah. I honestly cringe at the idea of people reading something like that. I guess I can only just hope that doctors don’t start prescribing prednisone off-label to kids whose parents go in demanding that their child needs to have his/her speech “unlocked” by it. :/ I’ve never personally taken any kind of steroid as far as I know (my allergies tend to respond decently to garden-variety antihistamines, fortunately) but I know that prednisone is serious business.

    And (sorry about this being disjointed, I’m not really in “cohesive narrative mode” right now), I completely know what you mean about the “drug thing”…it is very difficult to discuss *specific* drugs these days without a fair number of people jumping to the conclusion that a statement about A DRUG somehow applies to ALL drugs.

  13. I take prednisone sometimes for a platelet disorder. For about 2 weeks, it is great-enough energy to care for the kids and scrub the tile grout. Then I get twitchy and parnoid. The long term effects of stunted growth and osteoperosis can only be justified by otherwise life-threatening diseases.

  14. Oh God. I take dexamethasone (same catabolic steroid as prednisone, essentially – it’s all cortisol) for the same reason as Kassianne: CAH. It’s a lousy thing to take, it literally effects every single system in the body. If I don’t take it, I might die. I’m about to put my son on it, because he turns out to have NCAH. But we’ll be under the care of a pediatric endocrinologist, and we’ll be minimizing the dose. In our case, it is a terrible balance to try and strike: not enough cortisol, you have problems; too much, you have other problems. Neither set of problems is good. There are reasons, as you duly noted, for taking this steroid under controlled, risk/benefit analyzed conditions.

    But I fail to see how on EARTH they can think that cortisol would be good for autistics. While there does appear to be, with some, a problem with cholesterol use in some autistics – and cortisol has a role in that – I am really not sure what the pathway could possibly be for a speech impact of cortisol. If you look at any medical pub up on the web for the symptoms and effects of Cushing’s disease, you will see what comes of putting a person on more cortisol than they should have. Uncontrolled Cushing’s — whether natural or induced — means death within 5 years. “Catabolic” means “to break down.” It does that to every. single. part. of the body.

    What I can’t understand — and I’m a parent of an autistic boy and one with ADHD — is what exactly is so horrible about autism that one would want to kill their child, or let them be used as a lab rat. I am so extremely sad about what that means.

  15. This is why I seriously want medical practitioenrs to leave autism the f*ck alone: their world view of autism is detrimental to the autistic person.

  16. This is why I seriously want medical practitioners to leave autism the f*ck alone: their world view of autism is detrimental to the autistic person.

  17. Isn’t one of the classic warning signs of a possible quack cure that it claims to cure a number of seemingly unrelated conditions? Particularly if there’s either no explanation, or an extremely sketchy pseudoscientific one for why all these conditions would respond to the same drug?

    And having done some reading on demyelination in autoimmune disorders, as well as having read the descriptions of non-speaking autistics as to why they can’t (or can’t effectively) talk, I can’t even begin to express how incoherent the “how it works” section is. A steroid’s supposed to grow the myelin back, making the kids unable to talk? Even for a hypothesis, that’s exceptionally sloppy science.

    Have you done posts on the whole idea of “drugs” as a single homogenous category which people are expected to accept or reject, yet? Because that could be an area worth getting into.

  18. This has got to rank up there with chelation in terms of dangerous quackery. I mean, advocating ten times the RDA of some B vitamin is one thing, but giving glucocorticoids is so likely to be so damaging in so many ways, some long-term or irreversible (including death), that it’s insane that anyone would even consider it.

    …too much cortisol/glucocorticoid and you’ve basically got Cushing’s disease, and to little is Addison’s — both being fatal if not treated. And that’s not including all the less-than-death effects that other people have mentioned here. Even worse, enough exogenous corticosteroid taken for long enough can cause permanent adrenocortical failure which requires meds for life to remain alive. So, to put that stuff into a kid without some clear, necessary, and substantiated reasons (like asthma or adrenal failure — NOT some vague, unsubstantiated, truthiness-based theory) is INSANE. They may as well be prescribing huge doses of thyroid hormone (heck, or nor/epinephrine, or vasopressin…) to healthy kids to try to get them to talk.

    With cortisol being a necessary-for-life hormone, the stance of being against all drugs falls apart, since we die if we don’t have enough of it in our blood. This as opposed to say, Risperdal, which we can lack a single molecule of in our blood and be fine. This Prednisone treatment is akin to the insulin-shock treaments for depression in the past (e.g. Sylvia Plath).

  19. This is horrifying! I have taken brief pulses of prednisone for asthma flares, and it made me RAGE. I scared myself. How could anyone ever consider prescribing prednisone for an “off-label” use?

  20. Have you done posts on the whole idea of “drugs” as a single homogenous category which people are expected to accept or reject, yet? Because that could be an area worth getting into.

    Seconded, but now that you’ve given me the idea, I actually might make that post myself, or if Amanda does it, write our own anyway. And/or something about the idea of “alternative medicine” as a single homogeneous category which people are expected to totally accept everything in or totally reject everything in. (Yes, we take herbals and do yoga, no, we don’t do homeopathy or magnet therapy or Reiki… etc.)

  21. I think it is obvious from the information here that putting so-called
    auties on predisone is a bad idea. The question is what can we do about it?

    Maybe if someone knows where these people are trying to get their studies approved, we can go to their IRB (Institutional Review Board) and let them know that they are introducing their institution to financial liability and sponsoring indefensible ethical situations. If their IRB rejects their study proposal, then the advocates will not conduct their study.

    Speaking as a speech communication graduate, having a person that is mute is not the end of the world (sometimes I wish I had an excuse not to talk back to someone). It seems that folks in psychiatry and communication disorders believe that everyone needs a powerful steroid if they ‘fail’ to meet the norm through therapy.

  22. Woh woh, woh Ballestexistenz, easy on me.

    I may have generalized about drugs, and you sounds very emotionally attached to the subject, but please, no need to bite me head off. ;-)

    Also, give parents out there a reasonable doubt. There are a very very few people out there who are deliberating trying to introduce such dangerous chemicals in their child’s system. And I hope that the one that are allowing their kids to be used as Guinea Pigs, will be persecuted by the law.
    The vast majority of us parents, out there really, deeply care and love our kids and won’t ever harm them intentionally.
    It is great that you make us aware of the danger of this drug, though

  23. If you’ve been reading my blog for awhile, please go back and read this post about my lack of “I am nice” signals, and this post which is basically about reducing political situations to emotional ones.

    Basically, this isn’t about my opinion of you. It’s not about me attacking you. It’s not about my emotional attachment to a topic. It’s not about my opinion of parents as a group. And it’s not about whether parents love their children or not.

    I don’t know how to say this in a way you won’t take as “biting your head off”, at least not in a foolproof one. But your two replies so far have had in common that they responded to the real issue (children being given Prednisone, and/or children being used as guinea pigs in general regardless of safety) by replacing it with a number of other issues (giving drugs to children in general, my opinion of you, my opinion of parents, my emotional state, the love parents feel for their children, the fact that parents don’t want to do their children harm). And if people were to believe those were the issues, they’d miss the real dangerous ones.

    I’m not biting your head off or attacking you, and I’m not trying to run you out of here or anything, but it is important to know the difference here, and I don’t see how to point that out without responding to what you’ve said. I’m also seeing that your writing is very thick with social positioning signals. Mine isn’t. Often people find my writing unfriendly because they expect me to be responding to their signals in that regard, or sending out ones of my own. I don’t necessarily do that. Especially not this early in the morning while recovering from a serious language crash last night. This is too complicated for me to do anything with language other than stick to facts.

    But I’m Not Like That! is another good thing to read.

  24. Hi, just a quick reply because I have to soon leave.
    thanks for taking the time to reply to my post. (and this is not just being nice)
    a few things:
    “I cannot believe people are doing this to autistic children,” when I read this sentence I imagining that you are referring to parents who give the medical consent to give Prednisone to their autistic kids.
    Hence, my comment about giving parents the benefit of the the doubt.

    “I’m also seeing that your writing is very thick with social positioning signals. Mine isn’t.” I have no idea of what you mean with sentence.
    I have to run.
    ciao

  25. Captain Blog? Couple’a things here.

    Amanda’s talking about the parents who put their kids on stuff like that, pretty specifically. If you aren’t part of that group, why are you getting offended? She’s not talking about you.

    I agree that it sounds like Amanda’s angry. Know what? So am I. If you’re not angry about parents doing something that amounts to poisoning their children, I think that there’s something seriously wrong with you. And just in case I lost you there, I’m not talking about giving-kids-drugs, I’m talking about giving-kids-Prednisone in particular and giving-kids-drugs-with-potentially-fatal-side-effects-and-dubious-bebefits in general, and I’m talking about being angry at parents who do such things, not all parents and not you in particular unless you do that.

    Though I will say, you coming in and trying to derail the conversation with your ‘me-me-me’ attitude is pretty annoying all on its own, especially when, from what you said, this topic has nothing to do with you in the first place.

  26. Ann: Actually, I can see people of some temperaments seeing something wrong here but not feeling particularly pissed off about it. But I’d expect someone to at least see something wrong with this regardless of whether their emotions are in gear with that or not.

    Captain Blog: When I said “I cannot believe people are doing this to autistic children,” the “people” refers to some parents, it also refers to some reckless medical professionals, the people who run these organizations that promote this stuff, possibly people in pharmaceutical companies (depending on the situation), people who run and fund certain studies, and so on and so forth. And I mean specifically the ones who are doing this to autistic people. Not the ones who aren’t. Clearly, people are doing this to autistic people, because it’s being written about and promoted. I’m not sure where the benefit of the doubt for parents who are not doing this comes into the fact that this is being done to people (by both parents and other people).

  27. Ann: sorry I have annoyed you and started such a reckon.
    Ballastexistenz: thanks for allowing me to post.

    I was just trying to express my opinion. I am not angry, at all, or offended, just trying to understand better.
    I really enjoy free exchanges, and this is one of them.

    I think that if there are parents that are allowing medical testing with their children involving serious drugs such as Prednisone, and medical doctors are pushing such testing based on some hooky (sp?) science, they should be punished and persecuted to the full extent of the law. And, it would be interesting to find out more from that site and (may be) involve a watch group (not sure which, but I am sure that there is something like that out there).

    B. on a different note, I am part of parents who have organized ourselves in a special ed PTA and trying to make valuable changes within the system. We are leaning toward concentrating the next couple of years on the theme of “inclusive environment”. Our kids are all in elementary school.
    I would love to hear your take on this and may be if you have some resources you wanted to share. If you can, please answer me directly (I believe you have my email). I don’t want to highjack your blog. :-)

  28. I would venture the guess that at least some parents who allow prednisone to be given to their children may simply have a poor understanding of the risks as they have been described here. The site Amanda links us to, for example, does concede that this is a “very strong” medication but also makes it sound like it’s not really that serious as long as you’re reasonably careful. This contrasts dramatically with the horrified reactions of the people here — including even the people who have been on Prednisone and who do see it as a very necessary evil in certain (live-saving) circumstances.

    I could see where a parent who only has access to the kinds of descriptions provided at the prednisone web site (and not the kind of descriptions at this blog) could get taken in by it. Some people do still have a somewhat blind faith in the authority of medical personnel for a range of reasons (e.g., culturally ingrained attitudes toward people in positions of authority, upbringing, lack of education (leading to lack of appropriate literacy and other skills needed to do their own research) etc.).

    I know nothing about Prednisone except what is said here and what is said at the site linked to. But in just looking at the other web site, I would hope would raise red flags for more attentive or educated parents. The phrase “very strong” for example, particularly where the only apparent purported benefit is that it might help a child speak more. A useful skill, true, but I’d rather see a child have a strong grasp of *language* (written, signed, or spoken) than necessarily an ability to manipulate their vocal cords. And I’d rather see a child *healthy* and *happy* and effectively using non-linguistic modes of communication compared to a child who is speaking but in dangerously poor health.

    But at the same time, I can see where some less-educated parents might mistake a phrase like “very strong” as something *positive* rather than something to worry about. Combine that with faith in authority figures, an agonizing desperation to DO something, and a strong belief that spoken language skills are automatically superior to written or signed language, and I can see a recipe for disaster.

    I think the answer is EDUCATION, EDUCATION, EDUCATION. Both general basic education that teaches better critical thinking skills, and education more specific to the risks of Prednisol and what makes it so dangerous that even people who have a life-saving need for it shouldn’t be on it for too long. Plus, of course, more exposure to the idea that autism is not a tragedy, and that speaking, although useful, is not the be-all and end-all of happiness or even productivity.

    Maybe some of you who are more knowledgeable about both Prednisol and autism could consider getting together to assemble a “counter site” that would help clarify the risks and why the tradeoffs are just not worthwhile in the case of this particular medication in relation to autism.

  29. I wonder sometimes what the heck is going on with IRB boards. It seems to me that there is a lot of leeway given to do potentially harmful things to subjects in drug trials or studies of a medical nature. However, in studies of a more “psychological” nature that don’t involve drugs or physical treatment, the rules are (in my opinion) sometimes unneccesarily restrictive.

    Last year I ran a study that looked at when, and why, people change their moral attitudes. The only expected effect of the study was a slight temporary shift towards more principled attitudes (believing that it’s important to do the right thing no matter what) among some of the participants. In order to do this I had to lie to some participants about whether they would have an interview with a graduate student about their moral beliefs. I then told them the truth, and explained what the experiment was about, after a week.

    I went through hoops filling out paperwork, negotiating with the IRB, etc etc for months trying to get this approved. They never even specified what they were afraid the harm of this would be, just kept sending me rejection forms. Yet for medical experiments where it’s obvious that permanent, physical or neurological harm could be done, the experiments are allowed to go on (though they probably also have a lot of paperwork to write).

    I think it represents an attitude that medical science is more valuable to society than psychological science. I don’t buy it, especially when you’re looking at problems that are both medical and psychological.

    End of rant.

  30. What “J” says is interesting in this particular context: YES. Generally, one of the signs of quackery is that something claims to cure a bunch of seemingly unrelated problems. When you get into the endocrine system, however, seemingly unrelated problems are positively par for the course! Poor insulin responsiveness, cholesterol problems, hair loss, oily and thin skin, weight gain, vision changes, hirsuitism, extreme fatigue, changes in digestion, and a terrible time concentrating are all problems that I get when I’m not getting enough dexamethasone. If somebody told me this little pill would solve all those problems — and improve muscle tone — I’d look for the wagon and one-man band. And yet – totally related, one pill fixes all.

    NOW: that is also at the heart of the danger of giving a powerful steroid to anybody. You might be aiming at one problem, but a dozen are going to be created in the process because it is like trying to crush peppercorns with an anvil: not a pinpoint kind of substance in the slightest.

    Oddly, it isn’t a “drug” in the sense of an exogenous substance, as someone pointed out — it’s a synthetic form of a naturally occuring steroid that, in proper amounts, is critical to maintaining life. Too high or too low, though, and the whole elaborate mobile swings out of balance and comes crashing down.

  31. andreashettle: Exactly. That’s a real problem is that people don’t understand the risks.

    And part of the problem there is that people see drugs in a monolithic sort of category. They look at side-effect lists, and all drugs have long lists of possible side-effects (even sometimes things that really only happened to a few people), and usually the side-effects don’t all happen in the same person, etc.

    And it then becomes really hard to convince people that some drugs have a higher likelihood of really scary side-effects, and that not all drugs are in the same league as each other, not all side-effect lists are equally likely to happen, etc.

    Prednisone messes with so many different systems of the body that it’s in the seriously scary drug category. It is a far scarier drug than the neuroleptics (there’s no contest there), and the neuroleptics are plenty scary on their own. And the neuroleptics are far scarier than some other drugs that are prescribed to people.

    It’s those gradations people don’t get. Talk about the near-inevitable brain damage from long-term neuroleptic use and people go “Oh well there’s risks to everything.” Talk about the almost completely inevitable giant slew of potentially life-threatening or severely life-altering side-effects of Prednisone, and people say the same thing. It’s really hard to get across the idea that these drugs are not like aspirin, or even not like your average anti-convulsant, in terms of their danger level.

  32. From the website that Amanda linked to at the start of the article

    “Veronica Bird is the founder of Ahead with Autism. Inspired by her son, Ramsey, who was diagnosed with regressive autism at the age of two, she was alarmed at the lack of recognition of the early signs of autism by medical professionals. Driven by pain, compassion and love, Veronica made a vow to God to help Ramsey and others afflicted by Autism. Ramsey responded very well to medical and educational interventions. She documented Ramsey’s progress on video.

    After Ramsey was well on his way to a miraculous recovery, Veronica began producing an award-winning video, The Different Shades of Autism. The objective was to help medical professionals recognize the early signs of autism so intervention can begin as soon as possible. Numerous studies have shown that the earlier the intervention the better the long-term prognosis for a more normal, productive life for individuals with autism. Veronica has committed all her time and effort to the cause of autism awareness.”

    Why do I get the impression that so many of these sites are evidence of parents who see their child’s autism as a business opportunity?

  33. Thank you — you raise some excellent points here — and although I realize your focus here is on Prednisone, I see roughly similar problems in relation to parents of children with attention deficit disorder. There’s this sort of knee-reflex assumption that all drugs that could be used to treat AD(H)D are automatically bad and you’re a terrible parent if you use ANY medication for your child’s AD(H)D; or else they’re automatically good and you’re terrible if you never use ANY medication for the AD(H)D. (I think more commonly the former, or maybe the former are just louder and more visible.) And there’s not enough attention to the individual needs of the individual child and the trade offs in each individual case.

    But this is not a perfect analogy because the most common drugs given to children or adults with AD(H)D are not nearly as high on the “Scary Scale” as neuroleptics, never mind Prednisone. So for most standard AD(H)D medications, it IS valid to talk about “trade-offs.” I guess a better analogy would be if people suddenly discovered that Prednisone could help with ADHD too and started pushing that as a treatment. Then the “All Drugs Are Bad” people would have to be educated that, just because Prednisone really is that bad doesn’t mean that the other medications are anywhere near on that level, and the “All Drugs Are Good” people would have to be educated about the dangers of Prednisone so they see why it doesn’t matter how “bad” or “extreme” the ADHD is, it just isn’t worth it.

    That, plus overall critical thinking skills. If more people had better critical thinking skills they might not fall into overgeneralizations like, “All Drugs are _____ [your pick Good/Bad]” in the first place.

    I think people’s values in relation to disabilities may also be a factor. People might not consider dangerous drugs as a treatment for lack of speech in the first place if they did not overvalue speech (and undervalue alternate means of linguistic interaction such as writing or sign, or non-linguistic modes of communication such as gestures and pictures etc).

  34. Prednisone?! DO NOT WANT! I’ve seen first hand what it could do to my NT husband. Yes, it will make you focused. But he lost sleep, made him swell up, and all sorts of weird stuff…which as one blogger stated, may be more intense for autistic children.

    It is one thing to prescribe something for relief or to help people adapt. But to use something that powerful and dangerous? That’s putting one’s health at stake.

  35. Do you think that I told people that crack cocaine made my autistic child seem more gregarious, or that cisplatin chemotherapy reduced ‘stims’, there’d be a market out there?

    Sadly, I wouldn’t be surprised.

  36. I don’t know this guy or anything, so I have no idea if it’s true or not (so don’t print this if you think it’s not wise to) but just looking at how autistics are not the only ones experimented on against their will… http://www.care2.com/c2c/share/detail/134349

    (I mean, obviously from the stuff you write about institutionalized and marginalized ppl in general, you know **autistics are not the only ones**, I just wanted to post this because it seemed related)

  37. oh, CRAP. never mind. i just read more and that guy in the conspiracy-theory article above DOES have autistic (savant) family members. old saying about “is it really paranoia if they really are out to get you?!” well i donno, but i am going to read more.

  38. I took prednisone for a few years. Yes, I’m grateful it saved my life. But it made my life so miserable for those years that I spent manmonthes thinking of ways to kill myself and resisting such thoughts.

  39. I don’t know the guy either, so anyone who follows the link that n provides at #40 above should use their own judgment (and if you’re going to read it, then read it now before you read the rest of this, no reason to let me influence your thinking).

    But to me, it came across as a mix of what might be some bona fide system abuses with what might be paranoia. I’m not sure I’m convinced that medical experimentation is going on per se, though if this person’s description of events is reasonably accurate then it does sound like there was some forced medication going on. I’m concerned, for example, about the allegation of forced medication on the 14 year old — if that happened in the way that it is described, then it’s not clear that the people involved even bothered to explain what the medication was (in fact, it sounds like they didn’t), and didn’t explain what it was for. Did they even check to make sure it wasn’t something she was allergic to, or might have been on before and had a bad reaction to?

    I’m skeptical of the more heavily “conspiracy theory” bits (even the CIA gets mentioned in there), but some of the rest is worrying.

    I don’t remember seeing the word “autistic” though I did see one or two descriptions that made me think, “yeah, I see what n. means, some of them COULD be autistic” (though I don’t know anyone face to face who is autistic — at least, not recently — so what do I know).

  40. Pingback: Noli Irritare Leones » Blog Archive » Autism News

  41. I do agree that the “One medicine fixes a lot of different conditions” is only an indicator of quackery, but not proof. But the site’s setting off a whole lot of indicators of quackery. (one treatement for a bunch of separate problems? Check. A sketchy and incoherent explanation for why it would work? Check. Minimizing the risk? Check. A misleading and defensive description of any potential side effects? Check. All responses to criticism focusing on the critic’s percieve biases? Check.)

    captain blog, I do suggest you read up on the social positioning signals. I’m a non-autistic (neurotypical) reader, and there’s a lot of social communication that most neurotypical people do without being entirely aware of it. This leads to a lot of miscommunications with autistics, who generally don’t have the same automatic and habitual tendency to use these signals, and get misread as “angry” or “hostile” for not phrasing things in a way that subconciously assures people how nice and friendly everyone’s being, and how no one intends anything hostile.

    A lot of things in your posts (“easy on me,” the smiley, trying to reflect back her emotional state, adding a sincere but softening compliment at the end of disagreement) are very much designed to send out social signals of niceness and friendliness. This isn’t a bad thing in of itself (there’s a reason why, when dealing with all Neurotypicals, this is considered good communication skills), but it’s a good thing to be aware of, and to be careful about relying on.

  42. The book “Asthma and COPD” [Chronic Obstructive Pulmonary Disease] in the Clinical Practice Series, by David Price et al. London: Elsevier Ltd, 2004, has an appendix of drug tables. For Prednisolone (which I assume is the British equivalent of Prednisone) the dosage is 30-60 milligrams per day “taken in the morning after breakfast for a few days to control acute asthma attacks; reduce dose gradually if asthma control is poor. Use high dose inhaled corticosteroids when possible as they have fewer side effects.”

    The side effects are dyspepsia, ulceration, osteoporosis, adrenal suppression, weight gain, euphoria, depression, glaucoma, cataracts.

    A whole lot of other drugs for the treatment of asthma are listed, some of which have fewer side effects.

    The “ABC of Asthma” published in London 2006, states that “a single dose of prednisolone, 40-50 milligrams according to body weight, should be given each day for at least five days until recovery, according to the speed of the response.”

    “Asthma at your fingertips” published in London 1997, states that Prednisolone is the most commonly prescribed oral steroid in the UK. To treat cases of acute attacks of asthma the usual dosage for an adult is in the range of 30-60 milligrams a day, and for a child 20-30 milligrams a day.

    Is Predisnone (Prednisolone) taken to treat acute attacks of asthma because it is the most effective drug with the fewest side effects?, or has it acquired a dominant position in the market over other drugs unrelated to reasons of health?

  43. J, are you able to recommend any specific web sites on “social positioning signals?” My own understanding of this is a little fuzzy, I suppose because as you say non-autistics tend to use them without really being aware of them. My understanding I think is less fuzzy than it was a few months ago before I started reading Ballastexistenz, but I’d still find a resource on this (if any) to be helpful.

    I tried googling the phrase “social positioning signals” and got nothing. Is there some other phrase that might be more effective?

    Thanks.

  44. andreashettle, you are right to point out -or imply- that not all savants (like the guy’s brother) are autistic. it just seemed that the stuff he mentioned was a fairly autistic way to be a savant. but yeah, not certain.

    between healthily skeptical of conspiracy theories, and healthily skeptical of trusting any government too completely,

    n.

  45. Philip, it is the only thing that works with some accute attacks. This steroid is a potent — extremely potent — anti inflammatory. It is also used with some extreme allergic reactions, severe joint problems, a number of situations where swelling is causing a serious problem. Asthma just happens to be (to my mind) the best use of it, because the cost/benefit there is best.

    Other corticosteroids are very similar stuff. Inhaling it gets it right to the problem, but as I understand it, the systemic effects through blood absorption will be similar but muted. There are different types of corticosteroids with different strengths and some minor differences in chemical composition, as I understand it.

    I’m far from a medical professional, mind you – I’m just somebody who has been taking this stuff for awhile. Along the road in CAH, they change the drug that you are taking as you grow. Dexamethasone, the one I’m taking now, is so named because it is “ten times” the strength of cortisol. I’m not sure what prednisone is compared to cortisol.

    I’ve been doing a little research lately because one of my children has started showing signs of the same inherited disease. I’m checking into the drugs because I want to be maximally educated going into his upcoming appointment with a pediatric endocrinologist. If you take a look at the CAH websites, or do some looking under “cortisol” you will find the widest range of information about taking this long-term, and about subtle differences a person might notice from being high or low on cortisol in their system.

  46. Thanks, n. — I looked, and these articles seem interesting. But as I think about it more, I think what I’m really looking for is something that will help me recognize when I’m using some kind of “social signal” that might not make sense to some autistic people so I can figure out another way to say the same thing so it will be more accessible. I think these articles were a little broad and abstract for that particular purpose.

  47. Prednisolone is what is commonly known as Medrol in the states. Prednisone is a generic name.

    there’s no reason an autistic person without cortisol or autoimmune issues should need either.

  48. Some really readable and enjoyable books on communication and its role in social interaction are by Deborah Tannen, a linguist.

    Deborah Tannen’s website: http://www9.georgetown.edu/faculty/tannend/

    Books by Dr. Tannen:

    You Just Don’t Understand: Women and Men in Conversation
    Link: http://www.amazon.com/You-Just-Dont-Understand-Conversation/dp/0060959622/ref=pd_sim_b_1/002-3057199-1288060?ie=UTF8&qid=1180218167&sr=8-4
    That’s Not What I Meant!
    Link: http://www.amazon.com/Thats-Not-What-I-Meant/dp/1853815128/ref=pd_bbs_sr_4/002-3057199-1288060?ie=UTF8&s=books&qid=1180218167&sr=8-4
    Conversational Style: Analyzing Talk among Friends
    Link: http://www.amazon.com/Conversational-Style-Analyzing-among-Friends/dp/0195221818/ref=pd_bbs_sr_8/002-3057199-1288060?ie=UTF8&s=books&qid=1180218167&sr=8-8

  49. Hi Amanda, what a coincidence: I was recently prescribed prednisolone (2 x 25mg per day) because my jaw wouldn’t close properly. My doctor didn’t take Asperger syndrome into account because he doesn’t know what it is, and has never heard of the autistic spectrum. Anyway, the pills solved the jaw problem very quickly but caused one or two side effects, probably linked to the pills raising blood pressure. Nothing serious though, and I’ve finished the course of pills now. Luckily I have an Aspie friend who is a surgeon and knows a lot more than the average doctor.

  50. Hi Amanda.

    I came to this site from Aspies for Freedom, where I’m a member. I found this thread very interesting because I have an autoimmune condition as a comorbid of Aspergers and had previously been prescribed Prednisol.

    Here is the comment I left at AfF:
    “I’ve been on prescribed doses of Prednisone, since I have an autoimmune condition which improves with immune suppression. It helped with my autoimmune symptoms for a while, but I eventually had to switch to another drug. This is because my immune system begins to “recognise” drugs after awhile and I develop a tolerance and need to swap to something else.

    The Prednisone I took had no perceivable effect on my Asperger’s though, and I would have been surprised if it had. Being Aspie is who I am, I can’t imagine any drug or treatment suddenly “changing” me into a neurotypical. It’d be rather like waking up one day to find that you’ve become a different gender overnight!

    So speaking from personal experience at least, Prednisone had no effect of my Aspergers/Autism. I feel it’s probably another of those “Chelation/mercury/thimiserol” type things which neurotypical parents inflict on their Autistic children to feel they’re “doing something”. What a pity there’s no cure for the neurotypicals! The world would be a much nicer place if everybody was Aspie!”

    Anyway, those are my thoughts in a nutshell. I’ll definitely be keeping an eye on your site from now on, now that I know it’s here.

    Alison

  51. Some people do still have a somewhat blind faith in the authority of medical personnel for a range of reasons (e.g., culturally ingrained attitudes toward people in positions of authority, upbringing, lack of education (leading to lack of appropriate literacy and other skills needed to do their own research) etc.)

    Yeah. The culturally ingrained attitudes of blind faith in authority, especially medical professionals, seem to be pretty deep. Psychiatry and psychology have pretty much replaced religion as the great arbiters of truth, in a lot of places. Although I’ve heard a lot of medical and psychiatric horror stories, some of those horror stories could also have been avoided if people had not blindly consented to a “treatment” for their child that they were told would “help,” if they had not simply gone along with something their doctor assured them would help them or that they needed, if they’d done their own research on things and not simply believed that the doctors must know what they’re doing because they’re doctors, etc.

    Of course, I know that families, especially, are often bullied and manipulated by doctors into consenting to “treatments” for “mentally ill” family members. I’m not putting down anyone who’s been there; I know that people’s reason can sometimes really go out the window when they’re in a desperate spot. It’s just that there’s a difference between being bullied with threats like “your child will NEVER communicate if you don’t give them this”, and just blindly agreeing with every diagnosis that a doctor hands down, regardless of whether all those diagnoses contradict each other. And we’ve known people who did the latter– they never, at any point, seemed to step back and question what the system was doing. This is bad enough when someone does it to themselves, but worse when done to someone who does not have the power to refuse the “help.”

  52. Absolutely disgraceful, what people are doing………….Prednisone for treating autism, my arse.

    I alternate between being outraged, to being outraged and wondering what the heck they’re gonna come up with next.

    Seriously. Hopefully something thats not total quackery for a change……………

    Ivan

  53. j., n., Solaesta and andreashettle
    thanks for sharing your thought and resources on social positioning.
    Very, very interesting.
    Are you familiar with the work of Michelle Garcia Winner? She has social thinking workshop and classes geared people with social impairments.
    My HFA son has been taking a modified version… anyway, I am digressing.

    Ballastexistenz, you had lost me for a while, I quite didn’t understand your reactions to my postings. Also, you are so incredibly articulate in your writing, that I forgot that your may interpret my comments differently than what they really mean.

    My experience with social impairments are limited to myself (weird Italian chick, who has some cross cultural issues in this foreign land) , my HFA son (who is 6 therefore not too socially refined, AND with a social impairment) and his gang of friends (all around that age).
    Definitely I have a lot to learn on the subject.

  54. im a 15 year old asthmatic.. and though i don’t know very much on authism so i don’t know how it helps people with authism(i just happened to stumble upon this website doing a school project and it really interested me),i have been in the hospital for the majority of the past two months and been on prednisone since i got out of the hospital, about a month ago and countless times before this. so i understand the side-effects and how much they make you suffer.. im still suffering (and trying to stop eating!!) i don’t understand how anyone would put there child on a medication like that unless it was life-threatening!! it doesnt make sence….

  55. I could easily see desperate parents going for this treatment. Especially with the downplayed side effects description that you’ve mentioned.

    This is a really crazy and dangerous idea. Seems like the days of snake oil salesmen have not gone away.

    I hope this idea gets flushed down the drain. Before anyone gets hurt by applying a dangerous drug to something it doesn’t help with.

  56. “Oddly, it isn’t a “drug” in the sense of an exogenous substance, as someone pointed out — it’s a synthetic form of a naturally occuring steroid that, in proper amounts, is critical to maintaining life. Too high or too low, though, and the whole elaborate mobile swings out of balance and comes crashing down.”

    So, an analogy might be if they decided that injecting autistics with insulin was helpful. Obviously that would put their metabolism out of whack.
    Oh, I just remembered – they actually did that with ‘mentally ill’ people. They’d put them in a hypoglycemic coma and then bring them out of it. Sounds like a pretty deadly ‘treatment’ to me. Did it also have long term effects – eg compensatory reduced production of insulin or insulin resistance?
    I sent them an e-mail a few days ago, but they haven’t replied yet. Doubt they will.

  57. Some people do still have a somewhat blind faith in the authority of medical personnel for a range of reasons (e.g., culturally ingrained attitudes toward people in positions of authority, upbringing, lack of education (leading to lack of appropriate literacy and other skills needed to do their own research) etc.)

    Also, some doctors seen seem to encourage blind faith. (i.e. not taking well to showing of considering him/her less than all-knowing, and/or any indications of believing that one’s own intellect & common sense isn’t totally invalidated by not being a doctor.)

  58. My autistic son has been on prednisolone (a kid version of prednisone) many times through his 4 year old life for asthma. Each time he had bronchitis I would cringe, because I knew he was going to be given prednisone. He was totally off his rocker when on this crap. Yes, it worked for what it was intended for, but those 5 days he was on it was pure hell. Anger, rage, yelling, crying, hitting, biting all of these emotions within 5 minutes of each other cycling over and over. I can’t imagine what the results of this recklessness will be. God help those people see the light before they really hurt their children!!!

    … oh…. and the asthma that he was being treated for? Wasn’t asthma. Because of my own research and listening to other autistics… it was a milk allergy. Go figure. The all knowing doctors who so know what they are talking about… haha

    He’s now on no meds. I found that trying to balance out his deficiencies works best for him. He’s not perfect (heck…what IS perfet?), but there are much less issues when he is close to balanced.

  59. I have found that store-bought, ground turmeric (garden variety, grocery store McCormick brand or the like) has anti-inflammatory strengths almost identical to those of prednisone. Without the body-destroying side effects.

    The drawback is: it tastes abominable. (Well prednisone does too, but it’s at least a fraction of the size and swallowed up most often without sitting on the tongue.)

    A giant heaping tablespoon–then mixed into a paste with plenty of water added–will bring inflammation down for several hours to a full day (at least with my nasal rhinitis).

    Sometimes I mix it with a full glass of water, but keep it stirred as it’s depleted because the powder settles to the bottom of the glass almost immediately.

    It stains–don’t get it on anything.

    I’m just saying this is what I personally do. I’m not autistic (at least not with a full night’s sleep), I don’t have any autistic-style digestive tract issues; so I don’t know how heaps of turmeric will interact adversely if at all with that kind of metabolism if somebody’s got those issues.

  60. I have been on long term schedules of Prednisone several times in my life as treatment for asthma and Bell’s Palsy.

    During these treatments, the prednisone actually had a very negative effect on my emotional and behavorial well-being. Completely off my rocker in other words, as an earlier poster suggested.

  61. Prednisone is a serious drug and the decision to try it should NOT be taken lightly; HOWEVER, I have to add that my son who has PDD took Prednisone one time per week for a year&1/2 and it positively CHANGED HIS LIFE for the better. He stopped stimming, became social, and has almost recovered. I agree there has to be research done as to WHY this happened, he turned out to have an OVERACTIVE immune system, that is one reason why this helped.

  62. Uhm… question, why would it be considered bad to stim or not be social, enough so that anyone would even consider prescribing *any* medication for it let alone one like Prednisone? Neither of those are exactly life-threatening medical conditions. Yes, if I had a child with a life-threatening medical condition and a drug with potentially dangerous side effects were suggested, I would certainly weigh the potential benefits and drawbacks. But that’s nowhere in the same league as a kid just not looking “normal.”

  63. I went to the doctor’s with an acute asthma attack once. The doctor shot me up with prednisone and then called an ambulance. When the ambulance arrived, they shot me up with more prednisone. When I got to the ER, they shot me up again. I went totally insane. I was convinced that the hospital was holding me against my will and that I didn’t need to be there. (My pulse oxygen level was 89% on oxygen–very bad.) I ripped out my IV, threw things across the hospital room, screamed at the top of my lungs, and caused general chaos until they let me sign out AMA. I’m normally a very patient and laid-back person, but I’m lucky they didn’t send me to a mental hospital based on my behavior on prednisone.

  64. I have a child with Autism. We have decided not to medicate. BUT……. I am completly shocked at all of you people. You have all obviously not researched autism at all, or how if was found that prednisone can effect it. It is not dosed in the same way as it is for other uses. It is very, very small. There is strong evidence that autism causes problems with the immune system. There is STRONG evidence that prednisone CAN corrert that.

    I am jaw dropped by everyones asumptions about the parents of childern with Autism. I personally do not know one of us that could be bullied into anything by anyone and we are very well read on all treatments we try. I am sure there are some out there who are not the best and do what they are told but that is very few. Our childrens recovery is our life. We live and breath it. To assume that parents are making the choices without knowlage is just iggnorant.

  65. To “shocked: Some of the people here HAVE autism themselves, including Amanda Baggs who wrote the original post. And some of them HAVE BEEN PUT ON PREDNISONE, including Amanda herself (though in her case I gather it was for her asthma).

  66. To “Shocked”,

    Be careful about using the term “all” or “none”when applying them to any group of people.
    How can you be shocked by “all” of the people who use this site…Many are parents of autistics as I am and others are autistics themselves. How can you assume “all” parents of autistics can’t be bullied or that “all” have done their homework..I know we as parents were given a lot of mis-information by professionals…There is a lot of conflicting information out there..

    There are many autistics who take prednisone for other reasons who do not note an improvement other then in their asthma..There are so many things that go with autism and not all autistics are the same that there are many things that might help some but not others…

    Perhaps if you feel strongly about the subject of using prednisone you could link to some research.
    I have found the people on this site to be quite open to reading actual factual information. It sounded from some of the responses that they already had been doing some reading.. You need to respect the fact they may have also had negative experiences with prednisone.

    You say you are fighting for your child’s recovery…There are parts of autism that many autistics would welcome help with (perhaps movement problems or constipation) and others that are an integral and beautiful part of who they are…Sometimes parents coming to this site erroneously think that autistics don’t want help with anything when in fact many rely on special types of help to live their lives…

    Best wishes to you and your family…

  67. “Shocked” said this:
    ” It is not dosed in the same way as it is for other uses. It is very, very small. ”

    While the Immunosuppressing Autistics Kids Is Great! Site gave these as protocolsl:

    “Daily protocol: Typically 2-3 mg / kg in liquid or pill form, each morning or twice a day. This is continued for about two months, and may be followed by a two-month period of low-dose (every-other-day). The child is then weaned off the prednisone in ever-decreasing quantities for about two months.

    Pulse protocol: Typically 10 mg/kg per week in pill or suppository given over over 24 hours, every 4 or 5 days; or a dose of 50-75 mg Friday and Saturday– max. 100 mg Friday and 100 mg Saturday. This is continued over a period of several months. The child is then weaned off the prednisone in ever-decreasing quantities for several months.”

    Note for comparison that I’m about 47kg. I take 5mg TOTAL. The day I had OPEN SURGERY for TWO HOURS I had 120mg TOTAL, because I don’t make cortisol. That comes out to, under stress, 2.55mg/kg *stress dose*.

    That’s a small dose. Discussing further what is and is not is a moot point, because giving lupus-sized doses for autism is completely irresponsible. And I have been autistic (and alive, for that matter) long enough to know that plenty of people are just that.

  68. Prednisone actually has a very good place in Pediatric medicine, but it’s true not to be taken lightly. My dd has eosinophilic disorder, look it up, add in a dose of autism and severe food allergies and she’s got lots more to worry about then bone issues! Many kids, even toddlers, are scripted prednisone to help control the E.D. issues and help put some weight on their bones. Add in that many parents see a reduction in developmental issues when their kids are put on anti-inflammatories (FYI-that’s what prednisone is and why people think it may be beneficial in counteracting the developmental damages caused by ASD). Many parents that I know that make it out the other end with their children from E.D. issues actually end up having a normal life for once. There are more severe cases that will battle with the E.D. their whole lives and it’s sad. I was told my dd would “outgrow” the E.D. between 6mo.-1 y/o on her 2nd b-day I asked what happened and they said within the year she’ll get better. She will be three and just got her g-tubed placed and is in 6 therapies a week! She has the most limited diet one could ever imagine and never gets to even taste typical childhood treats. She begs for foods that she once loved, but we had to remove b/c of a reaction. I’ve been writing everything in a journal since her birth and it has been noted that her delays increased and the autistic traits came about when the doctors wanted her to trial foods they had said she was allergic to. It took about 3 mo. for all her speech to be gone and none of them even cared. I finally pulled all the foods and she began to talk again. The stemming subsided, PICA went away, and she stopped walking into walls! She’s not 100% and I fear for her future each day. However, our next step if an elemental diet doesn’t put weight on her and get her to stop bleeding rectally is prednisone and I will welcome it. We’ve tried other anti-inflammatories without any success, so it’s our last ditch effort to save her quality of life.

    Knowing what I now know about Eos conditions, which again is an inflammatory response of the body, it sort of makes sense to attempt anti-inflammatories with ASD kiddos. In addition, there has been much research and new beliefs that Eos may be a common issue amongst ASD kids that goes undiagnosed b/c of ill-educated doctors and a lack of screening. You know your common “colic” dx or “GERD” can actually be an Eos condition. More severe forms take on mucous and bloody stools or projectile vomiting and typically a red ring around the anus. Many doctors just dx cows or soya milk protein intolerance, which could be the case. However, nobody truly knows why the Eos are attacking the body and some kiddos get the response with any protein based food. My dd gets it when she eats carbs and her body cannot digest them. As such, all food passes straight through her and she is failing to digest the necessary nutrients. Couple that with the Eos attacking the carbs that for some reason it feels is a parasite and you have one heck of a problem. The only reason I know what I do and my dd has received the basic treatment to date, is b/c when she was 3 wks old I told 3 doctors to shove their colic theory when she had a bloody stool after 3 straight weeks of screaming! I found her a Ped. GI and he immediately biopsied her colon and found the Eos. It’s been a rollercoaster ever since. What happens to the kids that never get a dx though? Could it be ASD?

    I hope I will see answers in my lifetime, but what I care about now is how to better my dd’s life and future. I would stop at NOTHING to keep my child out of pain and trust me when I say to see her attached to tubing all night and being alienated from social events b/c food is EVERYWHERE, hurts more then one could imagine!

    Just my opinion, but I needed you all to know that there is a real use for these drugs with certain kids and if it works then I doubt we’d be hearing any critisism from parents.

  69. I have no problem with the appropriate use of Prednisone in anyone, child or adult, as I think I’ve mentioned. But the appropriate use of Prednisone is generally as little as possible, for as short a duration as possible, only to be used in circumstances where the risks don’t outweigh the benefits, and given that many of the risks can prove fatal, the disease it’s treating had generally better be fatal, potentially fatal, extremely likely to lead to fatal consequences indirectly, or something very close to it. And it should be used with even more care when treating children because the risks to children are bigger.

    That’s the consensus among most people I know who’ve ever used Prednisone (including myself), as well as most doctors I have known who prescribe it.

    There has already been at least one fatality among autistic children prescribed Prednisone “for autism”. And I have never bought “better dead than autistic so it’s worth the risk” sort of rhetoric, although I know it’s common. If this idea catches on, a lot more children will die, and I don’t want to see that.

  70. I don’t think you need to be too worried about the widespread use of Prednisone as a ‘drug’ to ‘treat’ autism. The only place it’s happening in an organised way, is in the USA, among a very small cohort of medical professionals and families.

    I am the mother of an autistic child who was prescribed prednisone for a life threatening auto-immune condition. It saved his life, and also managed to ‘unlock’ a lot of speech and language potential.

    The fact that this happened SHOULD, IMO, encourage the medical profession to investigate why, and seek safer alternatives.

    Autism is not something you cure. It is not a disease. It is a neurological condition, triggered and effected by a huge range of factors. It is something you live with, something you manage, just the same as any other condition that effects the way you live.

    I totally agree that ad-hoc use of any drug or therapy and any time as a catch all ‘cure’ is dangerous and also probably useless.

    I totally disagree that we should ignore something that has a positive effect on people’s lives, and shut down all questioning and investigation, for fear it will be misused.

    Penicillin, anyone?

  71. I am joining this post very late. I am INTRIGUED that some in the medical community are considering possible uses of prednisone in treating certain aspects of autism. I found this blog because I was prescribed prednisone for a back injury.

    The 2 weeks I was on it were absolutely amazing. I have severe ADD (no H). It affects every area of my life. I have a lot of talents but when you’re brain gets in the way and you can’t use them- it is very hard to be happy with what you are accomplishing in life. It absolutely cleared my mind in a way that nothing I have ever been on has.

    I have been anti-depressents, mood stabilizers, stimulants, pseud-stimulants. Stimulants have helped the most but in a very choppy, up and down, way. Being on prednisone was SMOOTH. I don’t know how to explain how it cleared my brain.

    Some on this post have said that there is no reason at all to think that P. would be any benefit to autism. That may be true. But there is also no reason to think it would totally clear my lifelong and severe ADD while I was on it. We don’t understand the brain. There is so much we don’t know.

    I understand that P. is dangerous. It feels so unfair that I found the only thing that’s ever worked for me, by accident, and now I can’t use it. But this is just a PIECE of the big puzzle. The results of a test like that, which I guarantee will be closely monitered by drs., might hold an answer that can help millions of people. with MANY different conditions.

    I am not saying it’s right or wrong- that’s for the Dr.s and the parents to study and work out and decide. I am saying that it is very good for us to be concerned about dangerous medicines. It is also good for us to acknowledge that we do not know all things. One of the ways we learn things that save people’s lives is by conducting studies.

    Seems like a better idea to to a study on adults with autism if one is to be done. But maybe they had reason to think it could help the development at a crucial time.

    Just wanted to be a voice of reason here to suggest that what you read about is MOST LIKELY not a group of parents and doctors who are just kicking back their feet and saying- what the heck? Sounds like an interesting study. We have no reason to believe it could help- but let’s just give it a whirl. And after that let’s try feeding them dirt for a few weeks and see how it affects their autism.

    Let’s advocate for wisdom. Let’s also recognize that science holds the key to many mysteries before we react emotionally to something that we don’t understand. Like why they would hold a study like that.

  72. My heart is breaking right now. I was online hoping to see if Prednisone could indeed be used to treat autism because my grandson who is autistic has just had the most wonderful week of his life because he was prescribed Prednison for for a mild case of Bells Palsy. His wonderful attention span, normal speech patterns, calm and happy mood were gifts I was hoping he could keep. He finished his doses today and now I realize that it will be like the movie, “Awakening,” and he will go back to the suffering child he has been. I would give anything if there was a study done, with doctors carefully monitoring for side effects and progress. I have heard of all of the horrible side effects of Prednisone over time and that it would be dangerous for our grandson, but to glimpse this happy carefree boy for just a week really is heartbreaking when I know tomorrow that will be over for him.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s