How they do the voodoo that they do so well - Part 2
September 19th, 2008
End Games:
Eventually, even the most successful, charismatic “alternative” practitioner will have a patient who doesn’t improve enough to satisfy the parents. Not only are these parents a real drag on the “alternative” practitioner’s ego, there is the very real chance that they might start to talk about how “the Emperor has no clothes”. For those situations, there are a number of strategies that are typically used.
Did you follow my instructions to the letter?:
One of the oldest dodges in the “alternative” medicine “biz” is to prescribe a regimen of treatment that is too complicated for most patients to follow. If they get better (by chance), then it was due to the “treatment” – if they don’t get better….well, they didn’t follow all of the instructions exactly, did they?
Much the same is happening in “alternative” autism therapy. One of the first chelation regimens promoted for treating autism required that the parents give their children a dose every four hours around the clock for two weeks. This meant waking the child up in the middle of the night – every night – for two weeks and getting them to drink a foul-smelling liquid.
The parents were cautioned that missing a single dose – or being late by more than two hours – meant risking having more mercury deposited in the brain. This – needless to say – was absolute nonsense. But no parent who failed to see the promised results could honestly say that they had given every dose on time.
Likewise, a parent who returns to the “alternative” practitioner and complains that the promised “recovery” has not happened will have to answer the same question: “Did you follow all of my instructions?”
Too little, too late…:
Another common retort of the “alternative” practitioner when faced with failure is to complain that the patient was brought to them too late. “If you had only come to me earlier.”, they will say. “The treatment is more effective on younger children.”
A variant of this excuse is to blame the parents for not being willing – or able – to do more therapies. “If you had been willing to try ABC and XYZ as well, he would be better by now.” This is the reason – consciously or unconsciously – that “alternative” practitioners will propose so many possible “therapies” at the start; the parents can’t possible do them all, which gives an easy “out” if (when?) the results aren’t as promised.
And if that doesn’t work…:
Since there are new “alternative” therapies coming out every week, the parents who aren’t happy with the progress of their autistic child can always be shunted onto another treatment “track”. “Chelation and mega-vitamin therapy not working? Try HBOT!”; “HBOT a bust? Try Valtrex for persistent measles virus!” [note: Valtrex/valacyclovir has absolutely no effect on the measles virus – it can’t, since it targets an enzyme the measles virus doesn’t have]
If shunting to different therapies doesn’t work, the “alternative” practitioner can always shunt the patient to an entirely different practitioner. This will almost always be another “alternative” practitioner, as a “real” doctor might say nasty things about the treatments the child has been subjected to – “alternative” practitioners rarely say nasty things about each other (see: “Glass houses, throwing stones and”).
There are none so blind…:
A particularly brazen tactic I have heard some parents discuss is for the “alternative” practitioner to contradict the parents and insist that the autistic child actually has improved. You’d think this would be a violation of the “parents know the most about their child” dogma, but it just shows how “flexible” that piece of dogma really is.
In this scenario, the practitioner confronts the parents who complain about the “lack of improvement” by saying something like, “Oh, but he/she has improved! You don’t see it because you are with him/her every day, but it’s readily apparent to everybody else!” Sadly, many parents probably buy this line, simply because is has the ring of truth. After all – as I’ve discussed above – autistic children do improve, even if you do nothing to/for them. If the parents think back, they’ll have noticed some improvement - especially if their “alternative” practitioner insists that they do.
Of course, it would be equally valid for the practitioner to pull out the medical record and show the parents the growth chart (they do keep a growth chart, don’t they?). They could show the parents the chart and say, “See, he was 95 cm tall when I saw him at three years and now he’s six and he’s already 110 cm tall! That’s real, measurable progress and all due to my treatments!”
[note: for those who don’t have a growth chart on their refrigerator door, those heights correspond to the 50th percentile at three years and below the 25th percentile at six years]
The scary thing is that at least some of the practitioners who have argued with parents over a lack of improvement truly believe that the child really has made significant improvements as a direct result of their “therapies”.
Heads I win; Tails you lose:
One of the best parts about being an “alternative” medical practitioner must be the ability to just make it up as you go along. For example, if a patient shows improvement after trying the “alternative” therapy, it was the therapy that made them better – score! If they get worse…..it’s the “toxins” coming out – score! It’s a win-win world – at least for the practitioner. There are a lot of variations on this theme, but they all share a common feature: no matter what is happening to the patient, it’s a sign that the therapy is working.
Like a lot of the pseudoscience in “alternative” medicine, this one has a grain (64.8 mg) of truth (fact) at its core.
Back in the early days of antibiotic therapy, doctors noted that people being treated for syphilis would often suffer from fever, chills, muscle aches, headaches and worsening skin lesions (in secondary syphilis) immediately after starting the antibiotics.
Two of these doctors – Dr. Jarisch and Dr. Herxheimer – discussed these reactions in papers they published,
[Jarisch A. Therepeutische Versuche bei Syphilis. Wien Med Wochenschr (1895) 45: 721–42. ; Herxheimer K, Krause D. Ueber eine bei Syphilitischen vorkommende Quecksilberreaktion. Deutsch Med Wochenschr (1902) 28: 895–7. ]
leading to the phenomenon being called the “Jarisch-Herxheimer reaction” (sometimes shortened to the “Herxheimer Reaction” or, worse yet, “herx”). Readers familiar with German will note that the article by Dr. Herxheimer is discussing a reaction seen after treating syphilis with mercury. This might account for number of “alternative” practitioners who claim to see a “Herxheimer reaction” while chelating for mercury, but I doubt that many of them have actually read the paper.
The Jarisch-Herxheimer reaction is also seen during treatment of Borrelia infections (Lyme disease and tick-borne relapsing fever), Coxiella infections (Q-fever), typhoid fever (Salmonella enterica serovar Typhi) and trichinellosis (a parasitic worm). It is caused by the rapid release of endotoxins from the bacteria (or parasitic worms) when they die from the antibiotic.
[Note: this reaction is due to inflammatory cytokines secreted in reaction to the sudden release of endotoxins, so "boosting" the immune system would only make the reaction worse.]
Anyway, it’s important to note that the Jarisch-Herxheimer reaction has not been noted during treatment of fungal infections (which would include “yeast”), despite the myriad references to “Herxheimer reaction” or “herxing” (shudder!) during “alternative” treatments of “yeast”.
Also, the symptoms of the Jarisch-Herxheimer reaction are similar to a bad “cold” or influenza-like illness (apart from the worsening of syphilitic skin lesions). It does not include the many fanciful symptoms that are often attributed to it by enthusiastic but poorly-educated “alternative” practitioners (and their fans).
Of course, a simple way around the limitations of the Jarisch-Herxheimer reaction is to simply avoid the term. Many “alternative” practitioners simply attribute any untoward symptoms (or lack of improvement) to “the toxins coming out”. Thus, if an autistic child shows a worsening in their behaviors after starting an “alternative” therapy, it’s “the toxins coming out”. If they develop a rash, lose their appetite, turn sickly yellow, suffer vomiting and diarrhea or collapse into a stupor….it’s “the toxins coming out”.
It’s a great system – if the patient gets better, it’s a sign that the “therapy” is working; if the patient doesn’t get better (or even gets worse), it’s a sign that the therapy is working.
Heads I win; tails you lose.
When in Doubt, Blame the Yeast:
[Note: "yeast" is placed in inverted commas because the term is usually used by "alternative" practitioners to mean Candida albicans – a specific fungus. However, the term "yeast" actually does not refer to a specific organism or even a genus. "Yeast" are simply single-celled fungi – it is a growth type, not a phylogenetic description.]
“Yeast” seems to be a popular scapegoat for “alternative” practitioners, although some hedge their bets by blaming “dysbiosis”, which has the same effect without tying them to a specific organism (or group of organisms). The obvious advantage to “yeast” is that they are ubiquitous – every body surface has some amount of fungal colonization or contamination, including the surface we refer to as our gastrointestinal tract. If you culture a stool sample, you can pretty much bet on growing “yeast” unless you do something to prevent it. “Real” doctors diagnose yeast overgrowth in the gastrointestinal tract (which does happen, but rarely) by microscopically examining the stool, looking for large numbers of fungal cells - not by trying to get “yeast” to grow out of a stool sample.
My favorite “yeast” quote comes from an audiotape of a DAN! “conference” made in – I believe – 2000. On it, a DAN! founding father (I’ll let him remain anonymous) makes the following statements:
“I test every autistic child for yeast. If I don’t find any yeast, I treat them for it, anyway.”
As silly as that may sound, he is just putting into words what many “alternative” practitioners express through their actions: yeast is always present (even if we can’t find it) and it is always a problem.
Reading through the material put out by various “alternative” practitioners, as well as the parents’ reports of their conversations with “alternative” practitioners, it becomes clear that “yeast” is also widely used to “explain” why therapies don’t work. Thus we hear:
“The [therapy] can’t work until we clear up the yeast (or “dysbiosis”).”
“He/she gets worse after [whatever] because it stirs up the yeast.”
“The [symptom] happens because the [therapy] makes the yeast worse.”
“The [therapy] was working until [event] caused his/her yeast to flare up.”
The list is endless, but the examples above should give you the idea. The bottom line is that - at least in “alternative” medicine - anything can be blamed on “the yeast” (or “dysbiosis”). This is because there are no agreed-upon signs and symptoms of “dysbiosis” or “yeast overgrowth”, as these terms are generally used by “alternative” practitioners. Any sign, any symptom can - in the eyes of the “alternative” practitioner - be a sign of “yeast”. And since there is thus no limit to what you can blame on “the yeast”, it has become a universal scapegoat.
Discussion:
I’ve probably omitted a number of gambits used by “alternative” practitioners, so feel free to bring up your “favorites” and we can discuss them in the comment section.
I also want to take this chance to reiterate my hopelessly naive belief that the majority of “alternative” practitioners are truly convinced that they are doing a valuable service to autistic children and their parents. I feel that most of them are honest (but mistaken) and sincere (but gullible) in their belief that their “therapies” are helping “recover” autistic children.
Which leads us to a topic that I have been pondering for some time:
The Semantics of “Recovery”:
I’ve noticed that the “alternative” autism therapy “community” has begun to settle on the term “recovered” to describe autistic children whose signs and symptoms of autism have either moderated or resolved. For the most part, this may be no more than people following a “fad” in the language they use to describe their children. It may also be a reaction to skeptics mocking their claims of a “cure”.
However, whatever the reason, the word “recovered” carries some implied meanings that are worth considering.
I’m ”well” again:
In the most obvious meaning of this usage of “recovered”, it implies that someone was previously “well”, became “sick” and is now “well” (or “better”) again. This is the meaning we use when we say that someone has “recovered” from “the flu” or has “recovered” from surgery. The deeper implication - as it pertains to describing autistic children - is that these children were previously “not autistic”, became autistic for some reason and now are “not autistic” (or “better”) again.
This ignores (perhaps deliberately) the very real possibility that these children were autistic from birth, and therefore can’t be said (even if they are “not autistic” now) to have “recovered”. You cannot “recover” to a condition you never before experienced. If someone is born missing a heart valve and they receive an artificial valve, you cannot say that their heart has “recovered” - it has been “fixed” or some other similar term, but it can’t have “recovered” because it never had that valve to start with.
At some level - possibly unconsciously - the people describing their autistic children as “recovered” are denying the possibility that their children were born with autism. For those people, the autism is something that was imposed upon their previously “well” (or “normal”) child.
I’m back:
Another meaning of “recover” that may be applicable here is in the sense of getting back something that was lost. People “recover” lost property, lost dignity and lost children. This meaning also plays into the mind-set of autism as something that was “done to” a previously normal and healthy child. Many parents of autistic children - particularly those involved in the “biomedical” treatment of autism - have long talked about “getting back” their children.
In both of these meanings, using the word “recovered” makes it linguistically impossible to include the idea that an autistic child may have been “that way” from (or before) birth. “Recovered” implies that the child was “healthy” and was then made autistic.
The implication that autism was imposed on a previously “normal” child leaves open the possibility that someone is to blame. And if someone is to blame, then there is “someone” to be angry at and someone to potentially pick up the tab for the treatments and special schools and special diet…. you get the picture. On the other hand, if autism is an integral part of the child at birth, then there is no focus for the anger and nobody to pay the bills.
Inside the “Shell”:
For years, I have heard parents talk about trying to “break through the shell” and find the child they know is “trapped” inside “the Hell of autism” (or other such phrases). At some point, I realized that “trapped” child they were talking about was the fantasy child that all parents-to-be create before the real child is born.
Eventually, all parents have to give up that fantasy child and live with the child they actually have. Few children live up to all of the aspects of their parents’ fantasy child; those who do may be the worse off for having done so. For some parents - especially those with disabled children - it is very difficult to reconcile the differences between the child they thought they would have (some say “deserved” to have) and their actual child. Some parents, sad to say, never let go of the fantasy child - and some of them will ignore, neglect or even abuse their actual child because it does not meet their expectations.
I am concerned that some of the parents who doggedly pursue “alternative” treatments for their autistic children are - consciously or unconsciously - willingly and knowingly risking harm to their actual child in the hopes of finally getting their fantasy child. They - again, consciously or unconsciously - do not value the child they have because they see it as “just a shell” that is keeping them from having the child they expected to have. What would those people do differently if they knew - or even suspected - that the child they see before them is not a “shell” and that there is no “normal” child “trapped” inside?
What would they do differently if they thought that there was no “lost child” to “recover”?
That’s what makes words so powerful.
Prometheus
Filed under: Autism Practitioners, Autism Science, Autism Treatments, Critical Thinking
September 19th, 2008 at 6:21 pm
Kudos to you for both this series and the previous one about science studies. I may not hang about to see the other commentaries, but both sets of articles are well written and present valuable information without bias, in my opinion.
September 19th, 2008 at 6:42 pm
You brought up the “recovery” discussion just in time. The premiere of the movie “Recovered” will be this Saturday.
Best,
Bisser
September 19th, 2008 at 6:55 pm
Ops, I take this back… the movie has been running since April.
Bisser
September 19th, 2008 at 8:46 pm
Oh my goodness!!! I was composing a post on a related topic– how fear is a key component of denialist thinking– and the whole autism woo issue came up, and I just couldn’t bear to finish until I read this post! Thanks for putting it so beautifully and for unknowingly giving me the strength to spit out what I was trying to say!
I love my Asperger kid SO MUCH– he is the light of my life– and I am filled with sympathy for these kids and horror at the very thought of anyone inflicting any of these quack treatments on these precious children!!!
September 19th, 2008 at 9:19 pm
You asked for examples. Here’s a fabulous example of a mother being misled. I’ve changed some of the details to protect the person posting.
The first message was posted this week. The second was posted in December 2007, before therapy XXX was even available. Notice how she attributes all improvements to chelation and growth hormone in the earlier post, but now, since she has started XXX, it has been the only truly effective treatment.
______
My son SON will be 17 years old in November. He has 2 MTHFR snips, RhoGAM at 28 weeks gestation and has the full load thimerosal childhood vaccines. His autism was considered severe. SON has a history of extremely aggressive behaviors, and our school district said he is the most challenging autistic students they have served, he goes from 0 to 100 in 2 seconds. We have tried about everything with him, DMPS; trandermal and suppositories, DMSA, Lupron, Growth Hormones, B 12 injections far infrared sauna, all mineral and vitamin supplements you can name. All have helped but not with the results I’ve seen with XXX. SON’s coproporphyrins were in the 46 with a ref. range of 0-15, they are currently at 17 after XXX. All of his labs have returned to normal, glutathione is above 1200, His CBC panel is now perfect, no irregularities in the MCV, MCH, Lymph’s, and his metabolic panel has also returned to normal ranges. His metals like copper, lead, cobalt, arsenic used to be up to 10 times higher than the ref. range. These are now normal. His behaviors is what is really telling us that he is getting healthy again. We have seen nothing but positives. SON said he feels better because of MMM’s stuff. He is making appropriate hand gestures, like come here or putting his finger to his lips and saying quite. He even now wants to sneak up on his dad and brothers to surprise them. He is recognizing facial expressions, knows when you are upset, mad, happy etc. He can sit and watch a show with you, says he is sorry when something isn’t right or he has done something wrong. He ask if I’m happy about him. I’m elated by his progress. His conversations are more than just his wants and needs, he notices his surroundings. He even makes jokes and wants to have friends. He wants a cell phone so he can call people. He understands waiting, and even excepts disappointments without a major meltdown. We can tell him not now or no without fear of problems. I was told many times over and over again that the older kids don’t respond to treatments. XXX has proven to be the one that works for SON.
_____
A typical child should have mercury levels between zero and 15. When MOTHER began checking SON’s levels two years ago, he was at 46. But his latest lab work shows he is at 24. MOTHER points to this as proof of how alternative treatments like chelation and growth hormones are effective.
“It took about two and a half years of just really intense treatments both natural treatments and chelation and the growth hormone and something to get his blood sugar under control. He still has thyroid issues but we were just at the doctor last August and she says everything is perfect except the thyroid so he is coming back, and he is really healthy and you can tell he looks like his brothers,” MOTHER said.
She believes the chelation and other medications are helping SON rid his body of heavy metals.
“You get forced to go away from mainstream medicine because their lack of interest in helping. You start researching and you start hearing stories about people’s kids coming back, and you start trying it and you start seeing improvements. Then you realize you got to go where you are getting help,” MOTHER said.
But that help doesn’t come cheap.
The family spends about $700 a month for SON’s medications. Even a sauna for treatment is more than $3,000. MOTHER started off small with the alternative treatments, with vitamins.
“We just did B2, B12 and B6, and he seemed not so nervous or flighty. His stems were not so bad. He used to just flap his hands constantly. He just seemed calmer,” MOTHER said.
SON’s levels of other heavy metals such as lead and copper are going down too.
September 19th, 2008 at 11:21 pm
You postmodernist! You realized that they are framing the solutions with words that eliminate things they don’t want to think about.
And - I posted this on the wrong comment section, you have missed the transmogrificatiin of yeast into an adjective … as in “he was acting really yeasty until I increased his mito meds.”
I think of yeasty as being a good thing, like bubbling beer, fresh baked bread, and effrevescent champagne, but apparently it’s a bad thing.
September 20th, 2008 at 11:17 am
I’ve never heard the fruitless quests of autism parents explainned so clearly and eloquently before!
This morning, I was trolling the blogosphere and found several by parents who are trying to “recover” their children. One actually has a goal of “curing” her three-year-old just in time for kindergarten. She’s enrolled him ih a long list of traditional and alternative therapies, and she estimates that her son will be in therapy at least 50 hours a week for the next three years. Fifty hours a week! She also has put him on the GFCF and is refusing future vaccinations, and she continues to search for additional interventions.
I admit that, for a second, I fell into the guilt trap while reading about her efforts(e.g. maybe if I’d done all that, my sons wouldn’t still be living on the spectrum). Thankfully, your words brought me back to reality. In three years, my sons will still have autism, and so, I’m afraid, will the sons of those who are still trying to conjure up a non-existent fantasy child. The big difference: for those next three years, I’ll be loving and enjoying my sons for who they are, not who I wish they could be.
September 22nd, 2008 at 4:05 pm
To emphasize what you stated: some progress is made and sometimes significant progress is made over the course of a lifetime.
I know of one man, who was diagnosed as a child spent hours rocking, repeating noises, sometimes banging his head on the wall and took a LOT of patience from his family.
Over the years, without woo, he gradually improved, to the point that in his 40s he has settled, married, and is a mildly eccentric but genuinely nice guy.
September 22nd, 2008 at 5:24 pm
There’s a great line from the Dr Who serial “Masque of Mandragora”:
“What school of philosophy is this?”
“I can easily teach him. All it requires is a colorful imagination and a glib tongue.”
September 22nd, 2008 at 8:56 pm
Oh, and I plan to link in this and part 1 into my post tomorrow. Thanks!
September 23rd, 2008 at 5:49 am
and all too many of these practitioners are raking in huge sums in order to fill their bank accounts, with no real help being delivered to the child.
September 23rd, 2008 at 3:06 pm
Prometheus,
You mentioned that symptoms at the time of diagnosys are not a good predictor of future functioning level. Could you direct me to some research on this?
Thanks,
Bisser
September 24th, 2008 at 2:09 am
This is a tangent from the autism theme, but I am furious that I can’t find a medical doctor in my town who doesn’t combine woo with their medicine. For example, the only doctor who treats allergies is an otolaryngologist who took some kind of semi-woo allergy training that includes an emphasis on treating Candida allergy. The doctor and his nurse/assistant insist that my allergies won’t improve unless I follow a yeast-free diet. They insisted on including Candida in my allergy shots… which seems to have lowered my resistance to Candida, all right, based on what my primary care doc notices at my annual pelvic/pap exam. The nurse insists that allergy shots are meant to “boost the immune system” and that my primary care doc “obviously knows nothing about immunology” when she asked them to stop giving me allergy shots for Candida. Regarding the diet: I’m not a microbiologist, but isn’t Candida albicans a completely different species from the Saccharomyces species used in cooking/brewing? Also, I have a lot of trouble with side effects from allergy/decongestant meds. So the nurse told me to take herbal antihistamines! Because they have no side effects! Right, like ephedra didn’t? And my primary care doc holds Andrew Weil in very high esteem. There are no other primary care docs taking new patients.
September 24th, 2008 at 2:31 pm
It isn’t just alternative medicine practitioners that go on the defensive when problems occur–blame-shifting to the patient (especially useful as you noted when preceded by detailed yet thoroughly impossible-to-perform-perfectly instructions) and charting “improvements” even when in fact things are rapidly deteriorating–are CYA strategies many “mainstream” health care providers can and do use every day. My experience was with a dermatologist who decided it would be more profitable to get rid of wrinkles using a product his buddy was selling than to look at warts and moles all day.
September 24th, 2008 at 5:22 pm
Ah, the wisdom of the Doctor … This one sums up the “I win, you lose” attitude:
“Some people don’t alter their views to fit the facts; they alter the facts to fit their views. Which can be very unpleasant, if you’re one of the facts that needs altering.”
–Doctor IV
The Face of Evil, I believe.
September 25th, 2008 at 3:31 pm
Hi Prometheus -
As a dissenting voice, our son got a rash on his chest when we administered Nystatin. Within two weeks, his self injurious behavior went from 30/40 times a day to a few times a week. It was a miraculous change for a little guy who had been hurting himself every single day for six months. After anti fungal administration there was a noticeable difference in the odor and composition of his bowel movements; in fact, it was the simple (noxious) smell of our child’s stool that caused the DAN to prescribe him an anti fungal.
We couldn’t care less if it was quackery.
Likewise, when we removed all complex carbohydrates (i.e., scd diet), he developed rashes two, four, and six months after diet initiation; as predicted. We took our son to the pediatrician, who admitted that he’d never seen a rash like that before, but whatever it was, it couldn’t be a hexheimer reaction.
Were we duped? I don’t know, but our camera wasn’t making up that he had a rash, the calendar wasn’t making up that it showed up at predicted timeframes, and our normal doctor saw the rash, but had no explanation.
Take care!
- pD
September 26th, 2008 at 12:05 pm
Heather,
“Alternative” medicine practitioners aren’t just chiropractors and naturopaths - there are a lot of MD’s/DO’s who have hitched a ride on the “A (for “alternative”) train”.
In fact, most of the so-called “DAN! practitioners” - who would have to be called “alternative” - have MD or DO degrees. Unfortunately, even an advanced education is no protection against faulty reasoning.
pD states: “…our son got a rash on his chest when we administered Nystatin.” This sounds like a pretty typical drug reaction. Your point was….? If you’re arguing that this was a “Herxheimer reaction”, I’d suggest you re-read the section on the Jarisch-Herxheimer reaction.
pD goes on to say:
“Within two weeks, his self injurious behavior went from 30/40 times a day to a few times a week.” “We couldn’t care less if it was quackery.”
Do you have data showing that this wasn’t just a coincidence? Seriously - is there any reason you have to believe that there aren’t as many or more parents who didn’t see an improvement on Nystatin? My own “anecdote poll” suggests that many more parent fail to see improvement on Nystatin than have the results you describe.
Maybe that’s because their children didn’t have “yeast problems”, but they were all assured - by certified “DAN! practitioners” - that their children had “yeast” prior to starting Nystatin.
As for the bowel changes you noted - perhaps it was all caused by “yeast” and the Nystatin helped. In that case, you’d have an answer to the question of why your child’s behavior improved - nobody is at their best when their bowels are upset.
pD further states:
“Likewise, when we removed all complex carbohydrates (i.e., scd diet), he developed rashes two, four, and six months after diet initiation; as predicted.”
I’d like to hear the explanation for rashes that occur at bimonthly intervals after “complex carbohydrates” are removed. Seriously, I would like to hear it.
Finally, pD asks:
“Were we duped?”
Well, if your “DAN” said that the rash after Nystatin and/or the rash after removing “complex carbohydrates” was a “Herxheimer reaction”, you were duped. Don’t feel bad, though - you have lots of company.
I have a question for you. It’s a rhetorical question, so don’t feel obligated to answer:
Would you have thought that something was wrong if the rashes didn’t show up “as predicted”? I suspect that you wouldn’t even have remembered it - or, if you did, your “DAN” would have simply passed it off as being “fortunate” (after all, who wants their child to have a rash?).
Kids - especially young kids - get rashes all the time. Most are from mild viral infections. Some are from medication reactions or foods. If I wanted to impress parents with my powers of prognostication, I could simply tell the parents of a young child to expect a rash (without specifying the type or severity) about every two months (which is about the frequency that young children come down with mild viral infections). [Note: see "The Lucky Stockbroker Syndrome" in my post "A Layperson's Guide to the Scientific Literature - Part 3 http://photoninthedarkness.com/?p=148 ]
I want to reiterate that none of this is about being stupid or careless - it’s all part of human nature. These are the inherent “flaws” in human reasoning that led to the establishment of “the scientific method”. We do science the way we do to keep from fooling ourselves - to allow ourselves to get around our inherent human tendencies to see patterns where none exist.
Prometheus
September 30th, 2008 at 6:05 pm
Hi Prometheus -
This sounds like a pretty typical drug reaction.
Well, our pediatrician, who has seen hundreds of children, and told us at the time he regularly prescribes Nystatin told us that he’d never seen anything like it. (?)
Do you have data showing that this wasn’t just a coincidence?
What data would you have liked me to collect other than what I have told you; number of head bangings from 40/day to 2/week. You ask me to believe in massive coincidence with as little evidence.
Maybe that’s because their children didn’t have “yeast problems”, but they were all assured - by certified “DAN! practitioners” - that their children had “yeast” prior to starting Nystatin.
Perhaps. I can’t speak towards what others have experienced. I am also not advocating that every child will benifit from such anti fungals. I believe that some will.
As for the bowel changes you noted - perhaps it was all caused by “yeast” and the Nystatin helped. In that case, you’d have an answer to the question of why your child’s behavior improved - nobody is at their best when their bowels are upset.
We are in agreement!
I’d like to hear the explanation for rashes that occur at bimonthly intervals after “complex carbohydrates” are removed. Seriously, I would like to hear it.
Well, the removal of complex carbohydrates is based on the idea that some gastro intestinal distress can be caused by abnormal populations of bacteria in the gut; and that by removing complex carbohydrates, you starve them of food. As for regressions and/or rash as they die, endotoxins are released, you feel poorly for a while. There are a great number of people who suffered from conditions such as UC and/or IBD for years or decades who swear night and day that this diet has solved their problems. I have a difficult time believing that these people are imagining relief from UC. I can find nothing either way in the literature on this.
Anyways, abnormal bacterial populations within the gut of children with autism have been observed; including several spore forming bacteria varieties of Clostridia, which were completley absent from children who didn’t have autism.
http://cat.inist.fr/?aModele=afficheN&cpsidt=13894837
Perhaps a batch woke up, starved out, died, and released toxins. Insert sarcasm as you might; there are many people who have observed what I am describing.
Here is a theoretical question for you; considering the vast differences in intestinal flora that have been observed in subsets of autism, why is it so foolish to believe that yeast overgrowth also exists? Clearly the system is abnormal in that area for some children; what reason do we have to believe that you might see dozens of different species of Clostridia in the intestine of children with autism, but simulatenously presume no overgrowth of yeast?
Don’t feel bad, though - you have lots of company.
LOL!
Would you have thought that something was wrong if the rashes didn’t show up “as predicted”? I suspect that you wouldn’t even have remembered it - or, if you did, your “DAN” would have simply passed it off as being “fortunate” (after all, who wants their child to have a rash?).
We have certainly ditched many biomedical interventions as we could not detect a change in behavior, cognition, or health. We did switch DAN doctors from our first one, primarily because we felt she wasn’t up to speed, and had been dead wrong on some things. Based on our sons behavior and bowel changes, we believe she was correct in regards to the benifits of an anti fungal agent. I’m not sure if that answers your question or not.
Kids - especially young kids - get rashes all the time.
OK. I suppose it is possible that a massive coincidence has occurred, and that the rashes my son has gotten corresponded to immediately following anti fungal administration, and severe dietary restrictions. I have no way of disproving the possibility.
We stopped SCD about 18 months ago (too hard!), and haven’t seen any rashses since. Maybe one is around the corner.
I could simply tell the parents of a young child to expect a rash (without specifying the type or severity) about every two months (which is about the frequency that young children come down with mild viral infections).
OK. In our case, you’d be wrong for about the past nine two month segments, but that’s OK.
Also, if that is what we experienced, one might think that our ‘normal’ doctor would have been able to identify the rash, as opposed to tell us he’d never seen anything like it. Again, I have no way of disproving that this isn’t yet another coincidence, and the rashes on our son were like one’s he’d seen previously, but he didn’t know, or didn’t tell us for some reason. You’d think he would have seen a pattern that wasn’t there and told us, but you never know.
I want to reiterate that none of this is about being stupid or careless - it’s all part of human nature.
Heh. I appreciate that!
We do science the way we do to keep from fooling ourselves - to allow ourselves to get around our inherent human tendencies to see patterns where none exist.
We are in agreement again. Unfortunately, in the case of yeast and autism, there seems to be strikingly little in the way of actual applied science on which to form an opinion. Our only evidence right now, is annectodal; some say they’ve seen benifits, others say the opposite. Perhaps there are some studies out there I am not aware of? [I pretty much can't find anything]
Fun discussion. Take care!
- pD
August 16th, 2009 at 8:25 pm
“Do you have data showing that this wasn’t just a coincidence? ”
do u have any data it is coincidence ? ?
it just maybe works for some people ..
and not risky to try ..
would u like to stop ppl try ??
this is not about beliving alternative med or not , this is about intelligence
August 22nd, 2009 at 10:47 pm
Tolga,
Welcome to the party! Better late than never!
I don’t have any data showing that pD’s experiences were a coincidence. However, since I’m not the one claiming that Nystatin reduced autistic behaviors, I’m not the one who has to provide the data.
Because autism is so varied in its natural course, it is impossible to make any conclusion on the effectiveness of a therapy based on one subject. In fact, it’s impossible to draw any conclusions based on studies of multiple subjects that don’t use placebo controls, because of the influence of parental expectations and attitude on the behaviors.
Perhaps it does only work for some people. However, you are wrong to assume that “it” (I assume you mean Nystatin) is not “risky”. Any real medication (and Nystatin is definitely real) has a risk of side effects - potentially serious side effects. This is acceptable if the benefits exceed the risk. If, on the other hand, there is no benefit, then any amount of risk is unacceptable.
Curiously, I have a number of people who accuse me of trying to stop people from trying these “alternative” therapies. This is simply not true. All I am trying to do is give people the information they need to make an informed decision. If, after reading what I’ve put on this ‘blog, they decide to go ahead and try the “alternative”, they will have made an informed decision. It may still be a wrong decision, but it will at least be an informed decision.
Is it intelligent to make decisions based on only “one side of the story”? Or is it more intelligent to hear from both “believers” and skeptics before making your decision? When you buy a computer or automobile, do you only read the favorable reviews - or do you read all the reviews?
Prometheus