Thursday, November 4, 2010

Why do some therapies work so well for some children and not for others?

I encountered the above question a few months ago on an internet forum. The forum is big on promoting all sorts of alternative therapies for cerebral palsy, ASD and the like, containing numerous parent testimonials on how much HBOT, Stem Cell Therapy, the Feldenkrais method, diets and the ilk helped their child’s progress. The general message of the testimonials is “It worked for us, you should try it, too”, and “you don’t know until you try it” and it gets a ton of cheers by fellow parents for all the great encouragement.

Parents exchanging information is certainly a good thing; however, information about certain therapies being nothing else but well-advertised woo-woo isn’t always welcome on such forums, whether they come from a fellow parent or no. Criticism of therapies isn’t frowned upon though if it is presented in the form “well, it didn’t work for us, but it might work for others”, with “we’re all different” and so on, suggesting that it is unknown factors that make it a mystery why certain therapies work for some children and not for others. There is, however no much mystery here, but before we can answer this question, we have to look into what it actually means that a therapy “works”.

Asking the question of why the therapies work in some cases and not in others contains the presumption that the therapies do indeed work in some cases, we just don’t know why. This presumption is supported only by the testimonials, the sometimes detailed descriptions of the child before and after the therapy. The difference between “before” and “after” appears to be very convincing for the readers, who are then appropriately encouraged to try the therapy with their own kid without further questioning (not without further “research”; they may read 100s more of similar forums with identical content and may read the therapy’s various promoters’ websites in countless numbers; what they don’t look up is factual data and the realities of the human body).

Most people (from all walks of life, whether parents or not, regardless of how highly paid or intelligent they are) don’t know where to find research data, and if they accidently encounter it, they don’t know how to read it. This is not a sign of stupidity; most people simply don’t need such stuff and they probably have better things to do than going through medical journals and paying for articles most of which are crap anyway. But it is because of the average person’s total non-involvement in finding data first-hand that most parents never get to find out that this or that therapy has been, flat out, without a doubt proven to be doing nothing by competent scientists who designed their study to rule out biases (HBOT), or the therapy uses new science and technology involving potentially dangerous substances the safety of which hasn’t been established and there are doubts because they make animals sick (stem cell), or the therapy in question is benign, but simply a renamed, remarketed, often watered-down version of an already existing therapy (Anat Baniel method). They don’t get to find these out, therefore they rely on fellow parents’ testimonials.

Why shouldn’t we rely on testimonials?

If quack therapies don’t work, why do so many parents report that they do? Surely, nobody in their right mind would think that those parents are lying, or they’re trying to deceive others, or that they’re stupid and they don’t know what they see. We have a good reason to think that all those parents know their children well and they’re perfectly capable to observe their child’s abilities before and after a therapy event or a series of events. They see progress because most of the time there is progress. The child couldn’t say ‘daddy’ before the hyperbaric oxygen therapy was started, and now, 3 months and several sessions later, he can say ‘daddy. The child could keep his sitting balance independently for a few seconds before the therapy started, but has shown progress after each session and now he can sit for a minute. The results are clear, they’re even measurable!

However, none of these results show that the therapy worked, regardless of how spectacular they are. Children—all kinds of children, disabled or not—develop, learn and progress all the time. If we observe any child at a point of time and observe the same child later, there will be progress and WE WILL SEE THE PROGRESS, whether we subjected the child to therapies or no. Sometimes children seem to improve a tremendous amount in a short time, and unfortunately a lot of parents attribute the progress to the latest therapy they did, instead of the perfectly reasonable explanation of the progress: children observe, experience, participate, see, listen, move, play—they do things all children do, things that everybody does, things that are behind all learning of all human beings.

Simply because one thing (progress) happens after another (therapy), we have NO WAY TO KNOW that the second thing was caused by the first. Unrelated events follow each other all the time. Just by observing that B followed A (however correct that observation is) we can’t tell for sure that there is a causal relationship between the two. If events that followed each other were always in a causal relationship, then I could claim that the sun sets every evening because I drink a cup of tea every evening!

In order to establish a causal relationship between A and B we need a controlled study. There is no other way of knowing so far, regardless of how smart and intelligent we are. In a controlled study there is an experimental group and a control group, which are as identical as they can be except for one factor: the experimental group does get the treatment and the control group doesn’t. What we must observe at the end is the difference between the two groups, because progress, however great, doesn’t prove the effectiveness of the treatment if both groups progressed equally. If the treatment group shows better progress than the control group, then we know that the treatment is effective. (There is a lot more to know about trials, but this blog is not the place to gather that knowledge!)

If we choose to read and understand the results of such trials instead of reading the 100th testimonial, we come unimaginably closer to bringing the right decisions for our children and family.

There are, of course, no controlled trials for everything (there is in the case of HBOT), but we do have other means to see through products and services that offer miraculous recovery. If a therapy is based on the magnetic properties of human blood, we know that it’s bogus because blood isn’t magnetic. If a therapy is based on the awakening of dead nerve cells, we know we’re being set up because death is irreversible. If the therapy is based on injected substances that make lab rats sick, we have a very, very good reason to keep our children away from such therapy.

Our question “why do some therapies work so well for some children and not for others?” is identical to the question “why are some planets in our solar system flat while others are round?” Both of these questions presume a statement as true—some planets are flat, and the therapies do work for some children—without even considering that the statement might not be true in the first place.

The biggest problem with all the countless bogus therapies is not that they don’t work; the damage is caused by the wasted time, energy, and resources. If we spend our money on a course of HBOT instead of buying an adapted bicycle for our child with cerebral palsy, we deprive our child from a superb physical activity, fun and quality time spent together. If we spend our days driving back and forth from one therapy to the other, we deprive our child from having a healthy and predictable daily/weekly routine, consisting of plenty of playtime and plenty of time and energy allocated to allowing the child to participate in their own care. If we hang on to false promises and false hope, we won’t find the real hope—every human being alive, however disabled, is capable of learning—for a long, long, long time. The upbringing we provide will absolutely have a huge role in the child's development, but upbringing has nothing to do with medicine, quack or scientific.

The parent who finds that his son has improved after “every therapy under the sun”, may be correct in his observation, but is not correct in his assumption that his son’s improvements were caused by the therapies. One could wonder what if the child, who has such a great learning potential that he continuously improves despite being dragged though untold amounts of various woo-woo, was allowed to spend all that time playing, or god forbid, physically participating in play activities with other children? The boy would most probably have improved a lot more without the therapies.

Be careful with parents’ internet discussion boards. I know how much it helps just to get your story out there and share your thoughts and feelings with many others who are going through the same as you are. I know how relieving it is when someone, somewhere UNDERSTANDS. But you must be aware that parents of disabled children are not more likely to possess critical thinking skills than anybody else, which means most of them do not know of the confusion about correlation/causation. You can be pretty much assured that most testimonials you read on these sites are a result of a parents not realizing that their child’s progress is normal, almost inevitable, and not the result of woo-woo.

Please understand your responsibility if you have a website, blog, magazine where you allow promotion of quack therapies. If you claim that your site is not a medical journal and therefore it doesn’t have to be accurate, and that you’re just trying to help by allowing free flow of information and encouragement and so on, please consider that your site is used by desperate and vulnerable people and they might take seriously what they read. The “information” on your site may affect parents’ decisions and affect the lives of their families and especially their disabled children in a very negative way. While free discussion should always be allowed, you can always balance out the one-way effect of a site like that with providing links to sources where the reality about these therapies is revealed.

Finally, the above photo shows India actively participating in a family dinner, feeding herself and chatting away with the guests. This is a great achievement for her, and it’s not a result of medical, quack-therapeutical or magical interventions, it is simply the result of good old teaching and learning. We taught her to do this by organizing our day in a way so that there’s plenty of time for dinner, we set her up in a way so that she can sit with us, we asked her and expected her to hold her own spoon, we helped her manually when she got stuck (without taking the spoon out of her hand), cheered her when she took bites, and we did this EVERY DAY. It took time and effort to do all this, because you can feed India a whole plate of food without her participation while she’s sitting in her stroller in less than 20 minutes, while the conductive upbringing version of dinner used to take well over an hour. The stroller version doesn’t contain any learning opportunities, while the conductive version contains nothing else but learning opportunities. There is no therapy than can compete with that!

http://conductiveupbringing.blogspot.com/2010/04/heartless-vol-1.html

http://conductiveupbringing.blogspot.com/2010/05/heartless-vol-2-tale-of-oxygen.html

http://conductiveupbringing.blogspot.com/2010_05_01_archive.html

Trick or Treatment: The Undeniable Facts about Alternative Medicine

8 comments:

  1. As always, amazing blog entry.
    As always, thank you and good to have you back to bloggin again...missed those!
    LOVING the photo of Ms. India participating in the dinner time activities. Photo worth a million bucks in my opinion :)
    Altho...tell Donnie no texting at the dinner table! haha!
    Thank you for your posts, your inspiration and care helps re-fill my "fuel tank" to help our sweet Ella move forward in the right direction.
    We still struggle with this daily. Holding out hope for us all however that we too can get there just like Ms. India did and does on a daily basis! :) Is the bowl India is eating out of on a non-slip gripper pad? Is she eating one of her favorite foods? Do you find most of the meals that she feeds herself are of a "stew-like" substance? Sorry, those may be too personal of questions. I just think that perhaps I need to do some greater amendments at home and just not assume that Ella can always eat what we are eating??
    Uff da....
    Debbie Weiske
    Wisconsin

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  2. As a special education teacher I dealt with this situation so often, and it was a struggle to balance what I was allowed by the district to say and what I knew to be true. I watched so many parents cling to false hopes and grab ahold of the "latest treatment" that they had heard about from another parent or therapist. We were required to provide data to support every intervention that we did as teachers - comparing a baseline (prior to intervention) to different points of intervention to justify the use of that teaching strategy and it would frustrate me to no end to hear these grand claims from treatments that had no data to support them. Parents wanted charts, graphs, and proof from me as a teacher as they should, but were willing to take the word of someone selling a cure. Meanwhile their children missed out on the opportunity to participate in the activities of being a child and to learn the most natural and proven way - through teaching, being included, play and participation in repeated routines. Thank you for having the courage to speak the truth and to speak out for the children who do not have a voice of their own. The photo of India at dinner is priceless, and she is a valuable member of that family activity. She is growing into quite a precious young lady!

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  3. Debbie,
    if anything is hopeless, that's parting Donnie from his phone LOL!

    India is using this plate: http://www.pattersonmedical.com/app.aspx?cmd=get_product&id=44599
    She can eat from any plate, but the food usually ends up on the table on her right side, she pushes it out as she keeps scooping with her left hand. She is much less messy with this plate. The suction bottom also helps.
    Her food has to be chopped and moist, but she's very proud of herself when we put things like bread, tortilla or a Twix chocolate bar into her hand because she can bite into those. She was so funny when we went to a sushi restaurant and I cut up and nicely arranged little bite-sized sushi pieces for her on her plate so she could pick them up with her fingers; she kept observing us for a minute, then reached out, grabbed a big piece of sushi, dipped it into the soy sauce(!), and bit into it. She ate it all by herself. I think children who are raised to help themselves will set us straight when we over-help them out of habit!

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  4. Bethany,
    I think educational research lags behind medical research and it looks like it is deemed somewhat "less important". It may be due to its complexity (we're not administering a substance), but I struggle finding good and helpful studies that give reasonable guidelines about how to teach. I am also perplexed when I find that the normal and natural ways of learning--through play and participation and so on--are dismissed or ignored in the case of disabled children because everyone wants a "fix". I guess we're stuck with common sense for the most part, I mean, how is a child supposed to learn something that they never did, never even tried? Just do it for god's sake...and I can't describe the frustration that I feel when I'm told this or that child has learnt this or that not because they were taught; but because they went to a therapy that oxygenated and grew their brain. I write this blog instead of pulling my hair out :-)

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  5. My apologies for being so late in commenting on this, Viktoria. (My commenting has been woefully brief of late.) You know I agree with you wholeheartedly. Here is my effort to help parents read research:
    http://www.therextras.com/therextras/reading-research.html

    Barbara

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  6. To support your vison, below please find the 12 Management Principles in Neuromuscular Disease –
    Based on Valuing Childhood
    By Prof. Lynn Staheli

    • When surveyed, most older people rate childhood as the most happy and valuable period of their life
    • Childhood has intrinsic value, it is not a time to be sacrificed in preparation for adult life
    • The childhood of the children with disabilities is often placed at risk – squeezed out by treatments


    Why Management Principles?
    • Health-care professionals have an enormous influence on the life of the child and family
    • Management principles help keep a balance between medical interventions and preserving childhood
    • Over the past 4 decades, we have found these twelve principles useful in maintaining this balance

    1. Consider the natural history of the disorder
    • The primary problem is a neurological lesion
    • Secondary problems are the effect of this lesion and include motor, sensory and integration difficulties
    • Tertiary problems include dynamic deformities of musculoskeletal system that tend to becomes fixed with time
    • Fixed contractures cause altered loading of joint cartilage, disturbed growth and bony deformity
    • These deformities limit function and mobility, and eventually causedegenerative arthritis and pain
    • Understanding this sequence is important in planning management to prevent the adverse outcome

    • A knowledge of natural history helps us differentiate the effect of our treatment from that of growth and maturation of the child

    2. Appreciate the significance of sensation and perceptive
    disabilities
    • The child with cerebral palsy has a loss of sensation that is often not appreciated. For example, a diagnosis of spastic diplegia does not acknowledge the existence of any sensory component
    • In the child with hemiplegia, hand function may be more limited by the sensory loss than the deformity and muscle weakness
    • The child with arthrogryposis with severe deformity still functions well because of intact sensation
    • The child with spina bifida may be burdened with recurrent ulcers or pathological fractures because of the lack of sensation. Sometimes these problems exceed those due to motor weakness

    3. Recognize the limitations of treatments
    • Our treatments do not correct the primary neurological lesion
    • Our inability to cure the disease means we manage symptoms
    • Acknowledging these limitations is important in developing a management plan that balances time for treatment and time for being a child

    4. Be cautious with comparisons
    • Our objective is give the child the best possible life – not to make the child normal
    • Be cautious about using normal values to assessing children with cerebral palsy
    • making limbs straight or gait lab curves normal may be counterproductive
    • Becoming too focused on

    5. Focus on appearance, function and comfort, not deformity
    • Focus management to the individual’s needs

    • Base management priorities on severity of the problems

    6. Provide functional mobility
    • Provide functional mobility to promote intellectual and social development
    • Functional mobility must be practical, effective and energy efficient
    • If necessary, provide mobility aids early to enhance independence. Children do not become addicted to these aids
    • Walking is only one method of mobility
    Make time for exploration
    • Adults with cerebral palsy rank communication and socialization above mobility in importance
    • Frequently the family’s major concern is whether or not their child will walk. Walking is important but not essential
    • Our goals is to help the family understand that the most important objectives are independence, social integration and mobility – not necessarily walking

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  7. 7. Establish appropriate priorities
    • During each visit attempt to keep the focus on these long-term objectives
    • Help the family accept the limitations caused by the neurological problem and the reality that this cannot be corrected
    • Avoid becoming focused on minor problems that consume energy and resources without long-term value
    Make time for friendships with other children

    8. Focus on the child’s assets
    • Like other children, children with disability have talents that need to be identified and developed
    • Take every opportunity to compliment the child and the parents

    • Time spent developing the child’s assets is usually more productive than time spent attempting to overcome the child’s disability

    Make time for creativity

    9. Shift priorities with age
    • In early childhood focus on mobility and self-care
    • In mid childhood focus on socialization and education
    • In late childhood focus on vocational preparation

    Make time for just fooling around

    10. Maintain family health
    • Protect the health and well-being of the marriage and family
    • Help the family find support groups to provide information, perspective, support and friendship
    • Recognize that all treatments have a cost to the child and family.Avoid overwhelming the family
    • The family is like a computer if too many programs opened at once it will crash
    • Monitor the family’s stress and avoid overloads

    Make time for family fun

    11. Avoid management fads
    • History of medical management includes a vast number of treatments that were either harmful or ineffective
    • Children are vulnerable, adults would never tolerate what has been done to children
    • Steer the family away from interventions that are unproven or unrealistic
    • Such treatments sap the resources of the family and lead to eventual disappointment for the child
    • Extensive bracing, misguided operations, and exhaustive therapies are examples of treatments once in vogue but later abandoned
    • Often management methods are like waves, a rise and fall followed a new wave of some new treatment
    • We cannot cure these disorders but we can care for the child and family

    Most important – care not cure

    12. Protect the child’s play experience
    • The objective is a child who meets it’s potential both emotionally and physically
    • Play is the occupation of the child. The child with a disability needs play just as other children – perhaps more
    • Preserve time and energy for this experience
    • The individual is a child only once
    • Special Olympics and wheelchair basketball are examples of appropriate team sports
    • Spontaneous play is best – let the child discover the joy of childhood
    • Monitor the child’s time and preserve time for play


    Summary
    • Monitor and preserve the health of the family – avoid excessive stress by too many programs
    • Help the family accept the child’s problem
    • Compliment and affirm the child and family whenever possible
    • Focus on the child’s assets
    • Provide time for a childhood with play

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  8. Rony,
    thank you for posting this info. I haven't encountered these principles before, but I couldn't agree with its contents more. (Although 'misguided operations' are still in vogue to my experience :-(...)

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