A Pill for the Placebo Effect
May 28, 2008 by Kristina Chew, PhD
Filed under Health
Jennifer Buettner, who has three young children, has created a new company called Efficacy Brands which makes placebos for children. The company will see cherry-flavored dextrose tablets (”Obecalp”—-guess what word that is, spelled backwards?); $5.95 for a bottle of 50. Buettner came up with the idea while taking care of a niece with a “raging case of hypochondria,” the May 27th New York Times notes:
“This is designed to have the texture and taste of actual medicine so it will trick kids into thinking that they’re taking something,” Ms. Buettner said. “Then their brain takes over, and they say, ‘Oh, I feel better.’ ”
The NY Times quotes a number of doctors who note that the placebo effect can be “‘unpredictable’” and who wonder if “giving children ‘medicine for every ache and pain teaches that every ailment has a cure in a bottle.” Buettner notes that she is prepared for controversy. The overprescription of antibiotics (in some cases, to parents who just want to give their child “something”) is cited; Buettner call this “‘a serious problem” and thinks that “‘there needs to be an alternative.’”
The premise behind “Obecalp” has got me reflecting about the various supplements and medications we’ve given Charlie. When he was younger, we tried SuperNuthera, DMG, TMG, Culturelle, cod liver oil, magnesium, vitamin E, BrainChild vitamins, and probably some others and I know that I looked for results and I liked to think I saw them. With something like DMG, the effect of “more attention” or “clearer speech” often seemed immediate, and soon faded. Charlie doesn’t take any supplements (aside from regular vitamins and calcium) any more; he does take medications and attempts to have him not take these have had immediate (and not desired) results.
I’m reminded again of how parents yearn so totally to help their child. I used to worry about what if Charlie never talks and anything that said “helps with language” or “enhances communication” got several looks from me. But I know that it’s been years of teaching, speech therapy, physical exercise, and just plain old growing up that have helped Charlie learn to talk: When he’s frowning as he tries to imitate how we hold our mouths to say words, I can see how he’s working at getting his mind and muscles to coordinate and produce—language.
And then there’s no guessing, if it was the pill—the placebo—or not.
Over at Help My Hurt, Marijke Durning has a poll up about what you think about giving a child a placebo.
We’ve tried a few things, including flaxseed oil/fish oil, all-natural children’s liquid vitamins, acidophilus (which my mother forced me to drink back in the ’70s, and it did NOT come in a palatable strawberry-flavored chewable back then); lecithin (thanks again to Mom); vitamin this and that (yep, mom again); cod liver oil (Oh. My. God); and of course, as organic a diet as one can acquire, which has become increasingly easier since 2001.
The only thing I’d anecdotally describe as seeming to do anything was the flax oil. Given that we have a very tiny data set and no controls, all I can say is that there appeared to have been a coincident improvement after a few weeks or months of the oil. Of course, we also had a therapist as our full-time nanny and were doing OT and speech therapies several times a week…so, can’t really say the oil did it. Maybe it was simply getting older. Quien sabe?
We too tried all the “wonder drugs” and vitamins when our daughter was younger and freshly diagnosed – eventually it got to the point where she wouldn’t eat or drink hardly anything because we had hid the meds in her food and they tasted awful. I can’t say we ever noticed a difference.
We use daily notes back from school as a blind objective review of adding or removing supplements. It has confirmed our obsevations and worked very well so far.
I noticed in one of the links posted this week on another topic the links for more stories and one of them was a teacher getting arrested for contributing to the delinquency of a minor for giving his students adult vitamins before their testing to help them. This was a third grade teacher and he was released, not sure if back at work, but it seemed he thought he did nothing wrong.
Chuck, we wouldn’t even know at this point. Our kids all get the liquid health-nut vitamins and acidophilus still. We haven’t done the oil in awhile, but my mother’s pushing it, and we’re going to start again. We ran out and just didn’t buy more. Haven’t noticed any change, but…I’m pretty sure that it can’t hurt. I’m getting ready to do a bit of an experiment with it this summer when I’ve got all my little data points at home with me.
Placebos certainly seem to work, but I don’t know enough to say whether the effect is real or not, as opposed to simply having an effect on the person observing improvements. Certainly, with autism, the latter seems more plausible.
I too think there are probably some ethical issues. In addition to the placebo effect, there’s also the nocebo effect.
We tried DMG for a while. We happened to run out lately, and I haven’t bothered to re-fill it. One of the twins is having a big burst in language, using phrases and beginning to pronounce things more clearly. I’m glad we hadn’t just started doing GFCF or something like that, because I would have attributed all the language to the new program, and I would have had to stick to it forever!
Obecalp! This is a great treatment for the catch-all diagnosis We’ll Get Back To You On That…which, as previously noted, 150 out of 150 children now suffer from.
“In addition to the placebo effect, there’s also the nocebo effect.”
That is why we use a blind third party (the school) to substantiate or refute our biased observations for positive/neutral/negative results.
Our son doesn’t even look at what is being feed to him so he will not influence any placebo effect.
Certainly the report of Charlie’s teachers has been helpful in regard to his medications. We probably tried too may supplement-type things at once so it was hard to sort out what was doing what—-plus, Charlie was doing ABA and/or VB and speech and…and…. etc., the whole time. So hard to tell.
Once when I was in kindergarten or first grade I was taking a vitamin supplement to supposedly improve concentration (after complaints from teachers that I’d spend hours just staring at a wall – this was a few years before my diagnosis). I called them “memory pills” which my dad didn’t like, but when I came up with a name for something, it would be the only thing to stick.
As far as I know nobody noticed any effect. Even if it worked really well, none of us would’ve known it, as it wasn’t that I was having trouble focusing – it was that I was focusing on things the teachers didn’t necessarily want me to focus on!
The placebo effect in autistic kids is not just about not showing the autistic kids which pills they are getting. When a double blind study is done on autistic kids (or babies) they blind the parents to the condition. It doesn’t matter so much if the child or the school doesn’t know what pill the kid is taking or what is in the bread. What matters most is if the parents or the doctor knows. The parents absolutely will look at the child differently, have different expectations about how the child will act, pay attention differently to the child when they start a new “regime”.
The parents have a profound effect on the child, even when they have convinced themselves that they are being all scientific like and neutral. They are not.
The only way to test the effectiveness of a pill on the kid is to get two absolutely identical looking and tasting pills and have someone randomly give the parent one bottle or the other where the person giving the bottle doesn’t know which one they are giving the parent (double blind). Then if the parent asked the school if the kid is changing (after some period) and they say “kid is getting better”, or “kid is getting worse” and then if the parents were unblinded, they’d have an idea if the pill was doing the thing. Particularly if they did a cross over where the kid got the real pill and then the placebo and then the real pill and then the placebo (or vice versa) and the parent was blinded to the time of the change over, etc. Then they’d have an idea if a pattern emerged.
it still wouldn’t be perfect evidence but it would be a little more convincing.
The very same placebo effect by proxy can happen with medications for seizures because the parental report of seizures is affected by how much hope they have in the medication. This according to a doctor who prescribes medications for seizures in children (Dr. Rust who testified in the Omnibus hearing). It’s not about accusations of “the biomed parents are dumb” it’s about the fallibility of people, period.
I have believed in probably ineffective therapies. I was a big time hippie, health food store groupie for a long time. I bought expensive vitamins for my kids when it really hurt my very limited budget to do that. I read all the groovy and serious looking books and vitamin and herb therapies for everything. I still have lots of bottles in my cabinets of essential oils from my aromatherapy period. I still have books on acupressure and I was into reflexology. I took my kid to an acupuncturist when I likewise could not really afford to. I did moxabustion for crying out loud. How many people can say that! I have hippie/organic/crunchy-granola street cred.
I own a pair Earth Shoes! My ASD kid used to wear Birkenstocks. My kids never drank kool-ade at my house, only 100% real juice. (sorry…for the perseveration)
Back to the placebo thing. I worry about a mom or dad deciding that the kids a whiner and not taking him or her in to see the doctor when it’s necessary. I also wonder why the kid is a hypochondriac and if there isn’t a better way to address that than feeding the hypochondria via giving pills, even if they are sugar pills.
In other news, a mom on the EoHam group claims she totally (absolutely) cured a formerly very impaired (nonverbal) autistic child with nothing but drops of water, or drops of water on sugar pills. Of course, she called it homeopathy.
No evidence for the power of the placebo effect in autism, I guess? No evidence for the power of tincture of time? :-]
“The parents have a profound effect on the child, even when they have convinced themselves that they are being all scientific like and neutral. They are not.”
That may be your opinion, it has not been our observation over the years.
A different way a placebo pill might come in handy is to help a pill/medication adverse child overcome the fear of taking pills. My daughter has only been sick a couple of times in her almost 4 years and it has been pretty much impossible to get an antibiotic in her (times she truly needed one). I’ve often said I wish that I could come up with a way to help her overcome this fear or aversion or whatever to medicine – before she needs to actually be on it again. I think a placebo liquid would be great. I could do it myself, maybe, but I want something that has the consistency of real medicine.
Happily, we did convince her to start taking her daily Zyrtec which has helped a lot. Now if we could only get all medicines to come in a delicious grape tasting chewable.
I too think time has been the biggest factor in M gaining language. I tried most of your list as well early on and then stopped. We do however used medication for aggression, anxiety and sleep and have seen great success in those areas.
We taught Charlie to take pills precisely to give him those supplements—–using the actual pills! (I’ve heard of people using m & m’s to practice.) So in an odd twist, when we put him on meds, it was a simple process to give him and the pills are far smaller than the supplements like the magnesium (which was a short-lived experiment—didn’t seem to help at all).
@goodfountain,
We just had to give up on cough syrups and other liquid medicines—-Charlie never took them from a spoon and what a gooey mess resulted. I once spilled a half bottle of amoxycillin on the carpet while attempting to get him to take it……
We use some supplements because my son is such a picky eater, he just doesn’t get all the nutrients he needs as well as having inflammatory bowel disease. They have been given under the supervision of Dr. Timothy Buie for years.
In the beginning of our journey, we tried DMG, didn’t do anything. We didn’t do the GFCF diet, waited to get a diagnosis from Dr. Buie, found out my son wouldn’t respond to the diet based on his biopsies. He had us try cod liver oil, but I couldn’t even get one dose in, so he had us switch to another form of the Omegas.
Haven’t succeeded in getting Alex to take pills yet. We have to put everything in applesauce.
@Ms. Clark, I agree and very well said.
I also worry about making kids grow up to think that there is a pill for everything. Why not just educate them a cold virus cannot be treated with a pill? I think education is the key, because antibiotics are overprescribed. The physicians should not be giving in to the pressure. We already have super resistant strains of bacteria, we need to develop more antibiotics, but if they are not used judiciously, the bacteria will just become resistant to the new ones. This isn’t new, I did a rotation in Infectious Diseases in medical school, we saw MRSA and even VRSA back then, it is just now hitting the media.
I have a blog which explains the physiology behind the placebo effect. I have tried to post it but the spam filters won’t allow it.
That blog is in April 2007
Before you decide to placebo anyone you better make sure there isn’t a true underlining problem such as allergies or constipation. You showing a child to “take something” when it really isn’t warranted could lead to dependency mind set later in life, this is regardless of needed or not…….
Antibiotics are not as over prescribed as the under usage of laboratory testing that needs to be done. Strep can cause organ damage if the doctor refuses to treat. Your heart, kidneys and other problems. A culture could be done to provide accurate information as to what the body is actually doing…..This is not done more times than an antibiotic is ordered……