Docs, you need to take more time ‘splaining ADHD meds to parents

May 25, 2010

As you know, DearReader, I enjoy talking about science with the Boss, aka the US taxpayer, aka my friends, neighbors and acquaintances. In fact I not only enjoy it but I think of it as responsibility both to them, the people who fund the NIH, and to my fellow scientists.
You are also likely aware that I have school-aged children and therefore this circle of interactions with the taxpayer includes chatting with the parents of children that my own kids interact with.
One of the conversations that arises fairly frequently has to do with medications prescribed for Attention Deficit Disorder / Attention Deficit Hyperactivity Disorder (ADD, ADHD). This is, of course, a big can of worms to be opening on the blogosphere and let me make it clear I’m not planning on discussing ADHD science per se.
In brief outline of the issues let us reflect on the following.
-as with most of the mental/behavioral disorders there exists a distribution or spectrum of traits, symptoms or behaviors. Depending on how you want to view them. At some point of extremity, we (meaning the clinical psychiatry/psychology communities) define or diagnose conditions as pathological and in need of intervention
-diagnosis is imperfect, we do not have alternate biomarker validation in most cases and there will always be those on the threshold
-specific traits or behaviors can be either trivial or maladaptive depending on circumstances.
-therapeutic intervention, even in the clearly pathological cases, is less than 100% successful.
-interventions which involve repeated or chronic administration of drugs which affect brain and other body systems have risks.
These end up being complicated situations for parents to navigate. Parents are subject to the usual stigmas about mental health, and are reluctant to consider that their child might actually benefit from therapeutic drugs. They are worried about the lasting consequences. They have, perhaps, run across the criticisms (some valid, many not) of ADHD diagnosis and medication that are available on the internet.
And their doctors are failing them.


Weirdest to me, of course, is that doctors do not manage to communicate* the nature of the drugs and what is known about the risks that are of most concern to parents.
We’re generally talking about stimulant class medications that are indirect dopamine agonists. This means that they have the effect of increasing the magnitude or duration of action of dopamine in synapses which use this neurotransmitter. (A direct agonist, in contrast, would be a drug which was able to mimic the interaction of dopamine with its target receptor molecules.) The stimulant drugs do this by either blocking the function of the dopamine re-uptake mechanism, enhancing the release of dopamine or both. The prototypical members of the stimulant class that are familiar from the recreational abuse side include cocaine, amphetamine and methamphetamine.
The more familiar ADHD compound methylphenidate is also dopamine transport inhibitor and it appears in a wide range of product names (Ritalin®, Concerta®, Focalin® are just the start). But what do you know? Good old amphetamine (Adderall®, Dexedrine®) and even methamphetamine (Desoxyn®) are medications which are approved to treat ADHD.
In very large part I find that parents are at best aware of the trade names, but have little concept of what is in each product. I should point out as well that the trade names confer subtle differences. Sometimes it is a mere formulation trick of the pills designed to generate a broader duration of target blood levels (e.g., XR standing for ‘extended release’) rather than the peaky on-off pharmacokinetics of more simple preparations.
Sometimes there are tricks with drug identity. It could be that the salt the freebase drug is bound with differs. Think of powder cocaine which is cocaine bound to the hydrochloride (HCl) salt. The ADHD medication Adderall®, for example, contains a mixture of amphetamine salts including the sulfate, saccharate and aspartate. The body dissociates the freebase molecule with some time involved and the argument is that this is another strategy to control the level of active drug levels at the synapse site in the brain.
Stimulant class drugs also occur as stereoisomers or enantiomers- right and left hand mirror images of the drug molecule. These mirror images can have different pharmacological properties and so sometimes brand names containing the same compound may differ in terms of right (dextrorotary; e.g., dextroamphetamine, d-amphetamine) or left-hand forms of the molecule. Sometimes I speculate that much of this is just patent and new-product IP issues of a for-profit pharmaceutical industry but this is unduly cynical of me. We think of d-amphetamine as being the active isomer and the l-amphetamine being inactive but this is just a relative ratio. The supposedly inactive isomer does have some pharmacological activity. This gives a basis for clinical variability.
You hear reports of varying success/intolerance for specific products with specific kids. I recall one taxpayer/Boss referring to one product as nearly miraculous and a second as “evil” for his/her kid when (IIRC) the root compound was the same. It is likely that individual differences interact with these varying pharmacological properties of individual pharmaceutical products to vary the outcome tremendously.
I don’t know where the problem lies but certainly the doctor-parent-kid interaction is not getting the information-transfer job done. Parents remain confused even after many months of the process from when the teachers first mention they might want to get checked for ADHD until meds are prescribed and deployed. Docs can do better and we scientists that know at least a little something about the matter can do better. It would save a lot of parental anguish.
Once parents grasp that ADHD meds are stimulants, they tend to focus on two concerns. Will they stunt my kid’s growth? These drugs are appetite suppressants after all and the target population is in critical growth years. A review from 2008 is a decent starting point. It tends to conclude yes, there will be effects on growth and body composition, it doesn’t vary much by major drug compound, there seems to be some catch up once meds are discontinued and….it is a really complex situation to try to predict outcome for a specific kid.
Parents also want to know if the drugs will make their kid a drug addict. Very complicated question. Not least of which is a co-morbidity between untreated ADHD and substance use disorders. Pre-existing liability? Self-medication? Environmental factors differentiating the diagnosed and the undiagnosed? …Like I said, complicated.
Nevertheless there is a recent vignette fielded by the PI of my most important low-N developmental biology project. It had to do with a parent of a highschool aged teen who had recently been put on one of the stimulant class ADHD medications. The doctor had failed to communicate* to this parent that these drugs were being recreationally abused and that there was a significant risk of his kid selling off some of his meds to his buddies. The parent was not aware that it would be a good idea to keep an eye on the meds. This seems to me to be a hugely significant breakdown in the communication between the prescribing doctor and the parents.
We need to do better.
__
*I use the term “communicate” because I have no idea what the doctors actually say to the parents in question.
Note added in proof: this had nothing to do with this post :-)
Updated 5/26/10: I’ve edited the original post a bit to clarify and expand on a couple of points.

59 Responses to “Docs, you need to take more time ‘splaining ADHD meds to parents”

  1. becca Says:

    I am deeply, deeply cynical. I can’t help but think about the studies that showed ADHD medications working equally as well as a placebo, as far as the parents/teachers could tell.
    Your example of the individual who thought one drug was great and one lousy, even with the same parent compound makes me wonder if 1) there was a really neat steroisomer/diferent cationic salt type of science thing or if 2) the drugs just happened to be tried in a subtly different setting (e.g. less stressful time period). What if we did a study that showed that the drugs ‘work’ best (i.e. teachers and parents reported better behavior, and grades improved, ect.) when the parents know least about the drugs?

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  2. DrugMonkey Says:

    Even after writing an out clause, first comment from a denialist. FML.

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  3. Cherish Says:

    I think an added issue is the teachers. Seriously, there needs to be some education of teachers who are working with ADHD kids.
    Teachers need to understand that these drugs are not a magic bullet and will not ‘fix’ the kid. Likewise, if the kid needs to go off the medication, they will be back at square one. Therefore, medication should not be the only intervention: working with kids to find creative and acceptable ways to deal with their attention issues as well as building necessary life-skills should be more important than focusing on the meds.
    Teachers also need to understand how dangerous these drugs could be. My son was put on 3 different ADHD meds in a six month time frame. He had very negative reactions to all three, including tics, extreme irritability, activity levels that would swing wider than what was seen without the meds, until we finally got to all out vomiting on the third try. After the third medication, I said no more, but the teachers kept pushing me to get him on meds. (At this point, I started homeschooling.) I found out one of his major problems was actually hypoglycemia, and once we started getting that under control, some (though not all) of his other issues were in much better control.
    My understanding is that long-term prognosis for children with ADHD was no different for kids on meds than those who were not. (Sorry, I can’t find the reference.) That is something I would have liked to know early on and that teachers should know before pushing to expose kids to these types of potentially dangerous drugs. I’m very sad to say that while I thought the meds would be a good idea at first, the teachers I worked with seemed to think the stuff was like candy.

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  4. DrugMonkey Says:

    Cherish that sounds like a misdiagnosis. Probably the diagnostic uncertainty can be better communicated as well.
    Part of the problem with teachers is that parents resist meds for kids who do need them. And yes, my denialist friends, there are kids who benefit from the meds and it is a very GoodThing. The diagnosis error does not in any way question this reality.

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  5. becca Says:

    dude, I must have stepped in it, because I recognize your response. To clarify, there’s a huge difference between:
    1) parents (and teachers?) are often confused about treatment, but treating might still make them feel better, which may itself have beneficial effects on the kids
    2) there is no disease to treat
    I’d humbly suggest that it’s… inaccurate *cough*douchebaggy*cough* to use the term ‘denialist’ for a person trying to espouse 1) and not 2).
    Particularly if that person is unfamiliar that anyone takes 2)seriously enough to be annoyed at (I’m guessing) what sounds kind of like dogwhistles for those that believe 2).
    (that *is* what I did to earn your ire, no?)

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  6. Docs are important and should be communicating better. But is there a role for the schools, as well? Shouldn’t schools, what with their school counselors on staff, and certainly with responsible docs and scientists in the parent community, offer parent education programs for these sorts of things? I think this is certainly the responsible thing to do, especially if the teachers are so often the ones recommending testing or treatment to the parents.

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  7. D. C. Sessions Says:

    Teachers need to understand that these drugs are not a magic bullet and will not ‘fix’ the kid.

    Not to mention parents. Meds give kids a chance to learn things at the age when they’re best capable of learning them. Which only works if someone is teaching, and especially if they’re teaching using ADHD-appropriate methods.

    Likewise, if the kid needs to go off the medication, they will be back at square one.

    Not necessarily. Meds give kids a chance to learn organizational and adaptive behaviors which make functioning off meds much easier.
    All of which is by way of seconding DM’s point. (Thanks, DM!)

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  8. Michael Ralston Says:

    Misdiagnosis is a huge problem with ADHD, too. I was on ritalin for years, and it almost certainly didn’t actually do anything for me.
    Then I got an Asperger’s diagnosis, and lo and behold, taking me off the drugs and teaching me to make eye contact instead of assuming I knew how but didn’t because I was a jerk … had some remarkable improvements.
    Not to say that ADHD isn’t real – in fact I’m sure it is – but a lot of people with other problems that have symptoms that vaguely resemble ADHD get misdiagnosed and it makes them worse, not better.

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  9. DrugMonkey Says:

    Shouldn’t schools, what with their school counselors on staff, and certainly with responsible docs and scientists in the parent community, offer parent education programs for these sorts of things?
    I’d say no, hell no. Teachers should not be giving medical advice and apart from the systems that are worked out to dispense meds in the morning to really young kids, schools shouldn’t be involved. This is not obvious?
    Now, perhaps the school could arrange for some informational sessions but IME, the numbers are not high especially when you consider that the decision to start the process is variable across grade level. The time when it becomes obvious the kid is really struggling in school varies a bit. It isn’t like you just take all kindergarten parents and put on a seminar for them. Well, you could but your specificity would be crap. Who is going to remember that a year and a half later when their kid is facing repeating first grade?
    My understanding is that long-term prognosis for children with ADHD was no different for kids on meds than those who were not. (Sorry, I can’t find the reference.)
    prognosis for what? I would like to see that reference because it sounds like utter anti-med, anti-psych hogwash to me. This is not some made up disorder. You can moan about how unfortunate it is that schooling has changed (if it has) and how the importance of success in formal schooling has changed and even about the pace of early education if you like. It won’t make the world go backward.
    This is the point I was making about context. I’m full willing to believe that certain behavior patterns were more tolerable and had less impact on life outcome at a time in the past. Also that you can be perfectly happy in the modern era being a relative failure at school because it doesn’t work for your ADHD symptoms. Lord knows homeschooling has become popular recently-i think we’re still going to be working out whether that is a curiosity or a major impact. Nevertheless, on a broad scale basis, getting ADHD symptoms that interfere with formal education out of the kids’ way is a good thing.
    I should mention ADHD can also be relevant to inter-personal relationships. Some of the behaviors are highly destructive for the parent, sibling and friend interactions. This part I don’t know the literature at all. But I’ve certainly seen it in children at my kids’ school. Often enough, I only find out that the kid in question was finally put on meds, long after observing a change in his/her behavior and social success.
    treating might still make them feel better, which may itself have beneficial effects on the kids
    of course expectations contribute. and I think this is more likely to contaminate teacher reports. but given the initial resistance of parents, the dose and med titration that is sometimes needed and the severity of the behavioral situation..well, their specific observations about the kid’s behavior when things do improve really questions the degree to which this could be only about parental expectation that the meds are doing something.

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  10. D. C. Sessions Says:

    My understanding is that long-term prognosis for children with ADHD was no different for kids on meds than those who were not. (Sorry, I can’t find the reference.)

    N=1 and all that, but …
    The kid who was so scattered he couldn’t keep track of where he was in a set of ten two-column addition problems took his BS in physics last week. Does anyone think that waiting for him to “grow out of” the concentration problems he had at seven would have enabled the same results?

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  11. DrugMonkey Says:

    Does anyone think that waiting for him to “grow out of” the concentration problems he had at seven would have enabled the same results?
    well the denialist cranks do. :-)
    seriously, it is not unimaginable that he (or another kid like him) would have eventually made it work. this is the problem of arguing from anecdotes- if we over generalize.
    Anecdotes are fine to lay out the field of likely possibilities and all but we go astray when we insist that the anecdote IS the rule.

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  12. Teachers should not be giving medical advice and apart from the systems that are worked out to dispense meds in the morning to really young kids, schools shouldn’t be involved. This is not obvious?
    Now, perhaps the school could arrange for some informational sessions but IME, the numbers are not high especially when you consider that the decision to start the process is variable across grade level.

    Yes, I don’t mean medical advice. I mean informal informational sessions. When I was in school, the PTA used to bring various types of expert parents or community members to discuss things like “Dealing with Sibling Rivalry” or “Combating Childhood Obesity” or whatever at parent ed nights. Why not “What is ADHD?” or “Truths and Lies about ADHD Medication”? Attendance rate might be low, but does that mean it shouldn’t be offered?

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  13. Nathaniel Says:

    Simple miscommunication between doctors and parents?
    I don’t think so.
    I lived the ups and downs of the medicated child. Being diagnosed with ADHD some twenty five is years ago. Check in more detail at http://www.adhdaction.com/medications-for-adhd.html.
    When I was told I had ADHD my parents were told they had the solution. The solution was methylphenidate or ritalin. Then and now most drug labels state:
    “The long term effects of this drug are not known”.
    As if to slyly say:
    We don’t know, but hey, don’t worry about it.
    thats the truth. The short term effects are well known. They calm you kids down. They get the bills payed. People are happy.
    I would venture to say that like me many children on medication are not happy. They are sedate and anxious.
    The grades are looking better but they feel like crap because they need medication to be normal.
    I made a resource to talk about the reality of my experiences. To help parents understand what might be going through their child’s heads.
    Its free and true.
    that is my little bit to help with education.
    Nathaniel @ http://www.adhdaction.com/index.html

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  14. D. C. Sessions Says:

    seriously, it is not unimaginable that he (or another kid like him) would have eventually made it work. this is the problem of arguing from anecdotes- if we over generalize.

    More like illustrate a well-known problem: that there is a time to learn e.g. addition, and not learning it at that time has long-term consequences.

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  15. ADHD or other executive function dysfunctions, medication, and symptom management & accommodations…what a can of worms.
    For short-hand, I’ll use ADHD.
    The disorder is incredibly heterogeneous in presentation. Some kids with ADHD exhibit hyperactivity, some don’t; some kids with ADHD exhibit impulse control difficulties, some don’t; some kids with ADHD exhibit inattention or distractablity, some don’t; some significant percentage of people with ADHD have learning disabilities such as dyslexia, dysgraphia, and or dyscalculia; some kids with ADHD have social skills deficits, but some don’t.
    The discussions around the proposed revisions in the DSM-V address some of the sticky issues involved.
    On top of the symptom heterogeneity, children’s symptoms change over time.
    Let’s layer family factors on top of this: ADHD is highly heritable. A child, one or both of whose parents are disorganized from untreated ADHD, is going to have a different outcome that a child whose parents are, well, organized, systematic and help the child with routines, organization, and discipline.
    Let’s layer school factors on top of this: in the last 15 or so years, demands on younger students’ executive function have increased (schools are expecting more mature behavior) while there is evidence that students are less mature from an executive function aspect that they were in previous decades. (see Elena Bodrova’s research, nicely summarized in “Crisis in the Kindergarten”). Also, playtime and recess has decreased and sometimes even vanished from elementary schools. http://ceep.crc.uiuc.edu/poptopics/recess.html. (Article is old but covers the bases)
    As far as medication goes, I highly recommend Glen R. Elliott’s Medicating Young Minds: How to know if psychiatric drugs will help or hurt your child (ISBN 1-58479-489-5) He covers ADHD and other disorders. One of the points he stresses is that in all cases, medications must be fine-tuned. As for ADHD, he writes on p. 73:

    As useful as medication can be for many children, it almost never is the sole solution to the problems ADHD can cause. Behavior managment can also be a large part of the process.

    Cherish is probably referring to the outcome from the multi-site study
    http://www.ncbi.nlm.nih.gov/pubmed/19318991
    J Am Acad Child Adolesc Psychiatry. 2009 May;48(5):484-500.
    The MTA at 8 years: prospective follow-up of children treated for combined-type ADHD in a multisite study.
    Jason, in my neck of the woods, CHADD, local pediatric group practices, and our local Special Education PTA offer the kind of informational talks for parents that you mention. Typically the presenters are pediatric psychiatrists or developmental pediatricians.

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  16. becca Says:

    D.C. Sessions- look, any bright kid can learn everything in K-5 in six weeks of intense study. I’m not saying there aren’t consequences (particularly social) at not being ‘at grade level’, but I *am* saying I know kids who e.g. couldn’t read until 10, and then became stellar students. Many kids will eventually make it work, but some will not. As a parent, if you don’t know which class your child is in, it makes all the sense in the world to see if the medication helps. The trouble is mostly in situations where it has multiple effects (some undesired) and/or the kid hates taking it.

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  17. anon111 Says:

    Getting back to your original question of what doctors communicate, I just so happened to have recently visited a clinical psychologist regarding my 4-year-old for a first-time appointment. The visit was very good with no rush diagnosis and a bunch of behavioral interventions to try. He did say the symptoms are some that are often early signs of ADHD. He gave us his personally written 10-page ADHD FAQ.
    The following snippets from that FAQ seems relevant to the discussion of what one doctor communicates.
    This is the information given very early in the treatment processes. I don’t know what the doctor adds if drugs are seriously being considered. I might editorialize in later comments, but I’ll let the document speak for itself.
    How is ADHD treated?
    * The primary treatment for ADHD is medicine, usually stimulate medications..
    * The most frequently used are:
    – Non-amphetamine stimulants: Ritalin, Concerta, Focalin, and Daytrana.
    – Amphetamines: Aderall, Dexedrine, Vyvance.
    * Research over several decades has shown taht these medicines are successful in helping children, adolescents, and adults in 70 to 80% of cases to function better, meaning pay attention better, concentrate better, organize more easliy, and, in general, be more successful in school and at work.

    How do these medicines work?
    * These medicines stimualte the brain to be more active in controlling the person’s attentional functions and behavioral controls.
    * They “level the field” so that people with ADHD can make full use of their skills and abilities and compete with others who do not have ADHD
    Are the medicines used for ADHD safe
    * For most kids (and adults), yes
    * If there is a family history of heart problems, tel your child’s doctor. (… need to monitor more closely)
    * Do these medicines cause tics?
    No, but if your child has a tic disorder, tell your child’s doctor (… need to monitor more closely)
    * ADHD kids do not get “high” on ADHD medicines
    * If the child “acts like a zombie,” the medicine needs to be changed or the dosage lowered
    * Regarding ADHD medicines and drug abuse:
    – There is NO evidence of ADHD medicines being addicting or leading to drug abuse.
    – In fact, there is research that indicates that not treating ADHD makes the kid more vulnerable to adolescent substance abuse.
    What are the side effects of these medicines?
    A long response listing head aches, stomach aches, loss of appetite, problems falling asleep, & late-afternoon/evening irritability.
    Are there non-medicine treatments for ADHD?
    * Yes, and we offer these whether your child is taking medicine or not.
    * Please understand that research shows that they are not as effective, and certainly not as quickly effective, and the medicines
    It then lists of reward system ideas & some research on computer based treatments.
    Are there herbal treatments for ADHD?
    * Yes, but as of this writing, non have proven treatment effectivenss in “double blind” resaerch studies. (A definition of double blind)
    * Without research, it is not clear if any improvement was really the result of treatment.
    * If you see some product advertised on TV or hear of a product from a friend or an alternative health practitioner, it is your right to try this product, but tell your doctors that you are doing so, as it might interfere with the prescription medicines the doctor is prescribing.

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  18. TreeFish Says:

    You dog. This is an excellent post on a very complicated topic. You’re channeling David Colquohoun without being obnoxious.

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  19. PalMD Says:

    Fantastic post. Seriously.

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  20. Swampy Says:

    As a former SPED teacher, this post is really interesting. I always felt as if regular ed teachers should receive some sort of training in the major learning and behavioral disorders, as well as receive some training in pharmacology issues…but with school budgets being what they are, such training is pretty low priority.
    And as a former SPED teacher, I could tell the difference between mild and severe ADHD within minutes of working with a kid. And I knew when my supposedly medicated kids didn’t have their meds for the day, week, or month.
    The stimulants have their benefits, but schools need to do better in teaching kids who are not “typical” in general. US schools tend to teach to the middle, hence the dumbing down of the “above” average and the failures of the “below” average.

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  21. Scicurious Says:

    Word, DM. Word.
    Scicurious approves this message. :)

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  22. Pascale Says:

    Like all “behavior” differences, ADHD requires a multifocal approach. Drugs work, but providing structure and other “soft” interventions along with the medications can improve success. I speak here not as a pediatric subspecialist (after seeing one particular patient yesterday, I am all in favor of a “foggable” form of Ritalin that we can pump into classrooms and exam areas like air freshener), but reflecting on the wisdom of my mother, who taught elementary school in a high-risk community where most of the kids spent at least part of their day in some sort of special ed class. Her humble opinion: the main value of the meds was to get the kids to focus long enough to learn and remember the expectations. Of course, it helps that she has a bearing that can only be described as “I would just as soon kill you and eat your flesh for a snack as look at you” which children seem to respect. Seriously, other kids got “Wait until your father gets home.” We ASKED if we could wait until dad got home. She never laid a hand on a student (nor did we ever get more than a light swat on the rear), but you just KNEW she would have no qualms about removing you from this earthly realm. Probably has something to do with the Prussian heritage.
    In Nebraska, at least, ADHD meds cannot be phoned into the pharmacy. Scripts must be written and handed to a parent or mailed out. On special scripts. That alone should be an indicator of their status. Since I share clinic space with some psychologists, I see the materials they give the parents, similar to #15 above.
    The bigger problem here may be the lack of health literacy in the population. That would be another blog post.

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  23. lisa Says:

    give adhd kids bb-sized ball of hashish instead of these pharma poisins. i saw it on youtube.

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  24. LadyDay Says:

    Count me in as a “denialist.” It seems to me that there is a high rate of ADHD misdiagnosis for kids these days, and I don’t know if many physicians are capable of seeing that or admitting to that.

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  25. DrugMonkey Says:

    Being concerned about mis-diagnosis is most certainly not being a denialist. I am concerned with those issues myself. Also with the curious phenomenon by which we confirm the diagnosis via response to pharmacotherapy.
    What is a problem are those that insist that there is no such thing as ADD/ADHD, that medicines don’t have any specific or useful effect and that it is all just a big conspiracy. Yes these people do exist and you can probably Google them up with little trouble.

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  26. Cherish Says:

    That was the study I was referring to.
    And yes, my kid has ADHD as well as a couple other problems, primarily being gifted and LD at the same time. I know the condition exists, and I’m not trying to deny that…but there are a lot of other ways to treat it that are often not pursued because medication is taken as the first line of defense. This a point some researchers have tried to make. (http://www.washingtonpost.com/wp-dyn/content/article/2009/03/26/AR2009032604018.html)
    The problem is that the teachers were constantly diagnosing my kid. “Can you bring him to the doctor and see if ‘x’ is a problem?” Sometimes it was, more often it wasn’t. You’re right: teachers have no business doing that, but they do, all the time.
    The biggest problem, in my view, is that medication is used to solve the problem of how school functions. Kids are supposed to sit quietly and work at a desk all day long. The medication is used as a chemical straight-jacket for those who won’t comply. And that’s really bad because this medication is, in fact, potentially dangerous. (If it’s not, then why should we be concerned about kids taking it recreationally?)
    I’m not saying kids don’t benefit from it, but I am of the opinion that a dangerous medication should be used as a last resort. Children with this problem need to be given opportunities to learn in a way that is more appropriate for their needs. In other words, teachers need to quit blaming the kids and parents and find a way to make a classroom that works for more than just the naturally compliant. A lot of kids with ADHD have co-morbid diagnoses which need to be taken into consideration when treating for a behavioral disorder. There is a huge problem among gifted children who have been misdiagnosed as ADHD because they were bored out of their minds in a regular classroom.
    What is done by doctors and requested by teachers is that a prescription is handed out and the parent is just supposed to medicate their kid. I don’t think I know of any other behavioral issue where medication is the end-all and be-all, and it really doesn’t need to be. And I strongly suspect that those for whom the prognosis is best are the ones who get a lot of outside support from families and teachers. If this is the case, we ought to be looking at that as the primary form of treatment.

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  27. Cherish Says:

    I should add that, going back to your initial point, maybe the doctors should be spending more time explaining the whole disorder and suggesting other treatment options *before* they start writing prescriptions.

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  28. anon111 Says:

    The confirmation of diagnosis via response to pharmacotherapy is the most problematic part of ADHD. As shown by the black market, give anyone some of these drugs and their focus will increase. By that standard anyone would be diagnosed.
    The interesting thing with ADHD (any many other medical conditions) is the final D, disorder. As the linked post by Prof-like substance’s notes, she has serious attention issues. I put myself in that category too. If those issues don’t rise to a point that prevents you from getting a PhD, doing well at a job, etc, then it’s not a disorder. If the same level of problems prevents someone else from doing what they want in life/career, it is a disorder.
    Context is relevant. In a society where there are less opportunities for people with short attention spans who can’t sit still, there will be more people with disorders.

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  29. The bigger problem here may be the lack of health literacy in the population.
    That is saying a mouthful.
    I’m naturally suspicious of “the good old days” andecdata, but it seems to me that my parents’ generation was better at home health care and behavior management than my children’s generation.

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  30. PalMD Says:

    andecdata

    Im stealing that.

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  31. Helena Says:

    As an adult student with ADD, I’d like to say: drugs are awesome!
    Since I started taking medication, my GPA has gone up, my efficiency/focus has increased, and the frequency and intensity of my moods has decreased. I can now study – actually study, not just pretend to study while wasting time. I actually listen when people talk, instead of merely pretending. By helping me focus long enough to think about my actions, I’m better able to control my life and make progress towards my goals.
    Also, regarding this conversational thread:
    “The kid who was so scattered he couldn’t keep track of where he was in a set of ten two-column addition problems took his BS in physics last week. Does anyone think that waiting for him to “grow out of” the concentration problems he had at seven would have enabled the same results.”
    People with ADD/ADHD have trouble focusing on things they think are mundane or uninteresting, but can be highly focused on things they do care about.
    Amusingly, I still don’t know my times tables (6×7 = 54? 76?) and am planning on minoring in physics because I like it so much.

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  32. augustine Says:

    @31
    Cocaine is a helluva drug.
    Steroids for performance, muscle hypertrophy, and low bodyfat also rocks. I love performance enhancing drugs.
    It makes football and baseball more interesting too.

    Like

  33. Gopi Says:

    @31: I was going to post something, but it would be quite similar to what you wrote. I was diagnosed with ADD in my mid-20s, as I was about to fail out of college. Ritalin made an immense difference, and meant I could operate as a normal adult. No straight-A miraculous superhuman stuff like some trolls *cough @32* seem to think, just baseline adult behaviour.
    augustine has been trolling around a lot. Judging by his vaccine posts, I think he’s just anti-science, and is a second-rate troll.
    Comparing methylphenidate to pro-athlete doping? My favorite quote re: doping was from the World Anti-Doping Agency chief Dick Pound, referring to Floyd Landis in the Tour de France:
    “He was 11 minutes behind or something, and all of a sudden there’s this Herculean effort, where he’s going up mountains like he’s on a goddamn Harley.”
    Ritalin ain’t close to that good.

    Like

  34. Luna_the_cat Says:

    I don’t know if you are able to find/get the Louis Theroux documentaries, but I watched one episode a few weeks ago (aha, “America‚Äôs Medicated Kids”, originally aired 18th April) where he travelled to the US to meet a few of the kids who were being medicated for ADHD and their families. It was interesting because he was quite clearly skeptical that there a real need for the medication to begin with (and yes, I personally wonder how much mis- and over-diagnosis happens), but you get to watch his turnaround as he talked to the people involved. It’s all too easy to level the accusation that children are being overmedicated to control the “normal” noisy, disruptive, or temperamental child behaviour, and sadly I’m sure that does happen — but Theroux actualy manages a documentary not just of the kids, but of himself figuring out that for some people there is a very real problem which we don’t have any other good way to address.
    erm, sorry about the long sentences. The overcaffeination is kicking in, speaking of drugs.

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  35. augustine Says:

    31 & 33,
    it made a difference between you making the cut. It was a performance enhancer.
    Lot’s of athletes take drugs (including adhd meds)to make the cut. It’ not only the Barry Bonds or Landis’s.
    You used it for college academics. What if little Timmy wants to use it to make the football team? Why is that not OK?

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  36. H.S. Says:

    Hmmm. Forgive me if what I’m saying has been said already upthread, but I suspect most doctors treating ADHD kids/families are primary care docs.
    With medical economics the way they are, primary care doctors cannot afford to counsel patients at length. They’ve got to move patients through rapidly to cover the costs of operating the clinic.
    How much serious discussion can get squeezed into a 10-15 minute medical visit? Not much.
    If we want doctors to spend more time counseling patients, they’ve got to get reimbursed for it. Right now, they’re not.

    Like

  37. Vicki Says:

    AR @ 29:
    I suspect that you’re looking at a middle-class group in which, 50 years ago, there was a lot more likely to be an adult at home who would get practice in home health care. All else being equal, someone whose primary job is taking care of their spouse and kids is likely to be better at home health care than someone whose primary job has them out of the house 50 hours/week earning money.
    The conditions we’re treating for are also different, as are how we deal with them. To be keeping track of psych meds at home requires that there be psych meds that are used long-term on an out-patient basis.
    More generally, my great-grandparents didn’t have to keep track of blood pressure or cholesterol meds; they had no access to such things. My grandparents did, by the end of their lives. My generation takes it as given that these things exist, and that if we aren’t taking them ourselves we likely have friends, or older relatives, who are.
    There’s just more to keep track of.

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  38. Jon H Says:

    Swampy wrote: “The stimulants have their benefits, but schools need to do better in teaching kids who are not “typical” in general.”
    Schools are something of a red herring. The most finely-tuned school customized to each individual student would just create a bunch of hot house flowers who can’t cope in the real world. Great, the students get good grades under ‘laboratory conditions’, but at home and in later life, what if they want to write novels? Or be a concert pianist?
    Fact: There are a lot of activities that require long periods of boring activity if you’re going to excel. Many of these goals will be entirely self-chosen, not imposed by a teacher. You can’t get far in life if you only do what most engages your attention. The boring stuff can be crucial.

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  39. Jon H Says:

    augustine wrote: “it made a difference between you making the cut. It was a performance enhancer”
    So are eyeglasses. Do you have a beef against them?

    Like

  40. Luna_the_cat Says:

    @augustine — try to understand the difference between “restores normal function which the vast majority of people have and which this individual does not because of maladaptive development” vs. “enhances normal performance to outdo normal people. ~The analogy with eyeglasses is perfect.

    Like

  41. Augustine Says:

    Do I have beef against glasses? No.
    Like I said steroids rock. I need them to keep up with the bodybuilders I hang out with. I just don’t feel normal without them. Besides when I come off of them my test levels fall way below normal which means I’m defecient. They also help boost my below normal self esteem and help lower my above normal bodyfat levels.
    Do you see where I’m going with this?

    Like

  42. Cherish Says:

    Augustine: Obviously the drugs haven’t done much to help your sociopathy.
    Jon: You know, I used to think that. But the reality is that a lot of kids can be taught the material if it is presented in a different way or they’re allowed to do it a different way. And, it turns out, that average kids benefit from a lot of changes introduced to benefit kids with disorders and disabilities. Most kids really want to do well and succeed, but the school is not designed to accommodate the kids on the fringe. But accommodating them often benefits everyone if concepts like universal design are implemented. (Isn’t this exactly what they tell managers: if you tell your employees how to do a job, you’ll be disappointed. You need to tell them what needs to be accomplished and let them figure out how to get there. Sometimes their ingenuity can be surprising!)
    And realistically, if you follow the research on education, a lot of what schools currently do is wrong, wrong, wrong. Teachers very often don’t have a good background in educational theory and will still be stuck in the decade in which they received their degree. (And school funding issues certainly don’t help…)
    Kids who come out with healthy (not overblown) self-esteems (because their differences have been respected) and a good tool kit of skills, especially ones they’ve been able to develop through their own gifts, are going to do a lot better than someone who has been forced to sit in a room, bored to tears, and learning how to memorize facts that may or may not have any applicability to later life. Schools ought to be focusing on inquiry-based learning and development of critical skills. Getting through the first 18 years of one’s life by rote memorization is maladaptive as an adult, as that is not what is expected to succeed in a job.

    Like

  43. Jon H Says:

    Cherish wrote: “are going to do a lot better than someone who has been forced to sit in a room, bored to tears, and learning how to memorize facts that may or may not have any applicability to later life.”
    So how does that help them with an endeavor which inherently involves sitting in a room, bored to tears, practicing scales? Or any other endeavor which inherently involves periods of boredom in between the fun stuff?

    Like

  44. anon111 Says:

    Jon, If being able to sit still and do the same thing over-and-over is a key lesson kids should learn in school then why not just strap kids to chairs and ask them to say the same thing repeatedly for the entire school day. Personally, I’d prefer a system where perhaps some kids don’t learn how to sit still and do tedious stuff and most kids learn math, reading, history, reasoning, etc.
    The simple fact is that attention abilities are on a continuum. If you require all students to sit with their hands on the desk and only talk when spoken to, you’ll have a lot more kids with attention problems than if they are allowed some freedom to move and given a reasonable number of breaks during the day. There will still be kids with attention problems, but many fewer. I’m not sure why you think changes like this set kids of for failure.

    Like

  45. becca Says:

    “So how does that help them with an endeavor which inherently involves sitting in a room, bored to tears, practicing scales?” Most of the homeschooled kids I observed sat outside, patiently engaged, with a guitar on their lab in the sunshine practicing scales.
    I fail to see why being in a classroom with a teacher and being unhappy increases the quality of the scales.
    Mind you, most of the homeschooled kids I observed *are* less willing to sit in a room, doing what others tell them to do, bored to tears. On the other hand, they grow up into *exactly* the kind of people I want running my university meetings on parking. It’s amazing the kind of solutions you can facilitate when you don’t accept boring meetings as a necessity.

    Like

  46. katydid13 Says:

    It seems like we should by now have some data on the long term effects of ritilan. My father and all my three of my uncles took ritilan for at least two decades for narcolepsy that I can remember. Possibly three decades. They can’t be the only ones. It used to come in huge bottles and was kept in the fridge. I know my father tried to take as little ritilan as possible because of a visual distrubance.
    They all switched to provigil (I may have misspelled that), which my sister described best as giving us “the new Dad.” He actually stays awake during the day if he takes a 20 min nap at lunch.

    Like

  47. DrugMonkey Says:

    It seems like we should by now have some data on the long term effects of ritilan.
    We do, there are some studies. I linked to one review and put in some other PubMed links that will put you on track if you care to investigate.
    For the most part there’s little evidence of widespread adverse effects. But we exist in a culture that is not tolerant of low-percentage risks and tends to want to drop medications that help lots of people on the basis of the small minority that get harmed.
    We also, see this thread, have some healthy debate about the plus side of these drugs and whether or not the problem is really the expectations involved with modern life / modern schooling.

    Like

  48. frustum Says:

    More anecdotal support for the reality of ADHD. My son has a few problems due to an extremely impoverished environment before we adopted him at two. For the first few years we tried typical parenting things and hoped he would outgrow some of his issues. When he was kicked out of kindergarten we got some diagnoses. Fast forward after a few years of various drug-free therapies and we ran out of gas.
    So we tried a series of drugs to address some of his problems, but only the first was effective for a month before it faded, then the rest nothing.
    At age eight he went on Vyvanse for his ADHD. It was a long weekend while he got used to the change, but by Monday he was good to go. His teacher couldn’t believe the difference in such a short time. At the end of the year she asked to keep his workbook to demonstrate to doubtful parents that for some kids medication works. On friday he couldn’t write full sentences and couldn’t even keep between the lines; on Monday he could write neat complete paragraphs.
    More importantly, he expressed that school was better — being distracted all the time was not fun. Getting positive feedback instead of constantly being called out for messing with other kids boosted his self-esteem.
    I know this sounds too pat, “a silver bullet,” but that is exactly how it went down.
    YMMV

    Like

  49. DuWayne Says:

    Hmmm…I always miss the fun ones…
    Cherish – if you are about –
    Actually, there is some evidence from long term studies that indicate that people with ADHD who are on a stimulant therapy as a teen are considerably less likely to suffer substance use disorders as an adult. They also indicate that such people are less likely to need medication as an adult.
    And if a child is not misdiagnosed, the meds are likely to help. A big part of the problem is that these are powerful stimulants and children quite often have rather nasty side effects. These include sleeplessness, lack of appetite, nausea, mood swings and sometimes major emotional reactions. Part of the problem is that some of these effects may be due to a misdiagnosis – ie. the kid just doesn’t need the meds. But it is hard to determine because some kids who are definitely ADHD and for whom those symptoms are improves, still have any or all of those side effects.
    As for meds being a first line of defense – I understand that happens and find it deplorable. But that has not been my experience. We had our son in therapy for a year and did all sorts of exercises (mainly mind exercises) before we tried meds. Unfortunately he was unable to eat much and his sleep patterns resembled mine. It was unfortunate, because he was able to focus a lot better and his impulse control was a complete turnaround. He went from being completely unable to control his actions in relation to his thinking (ie. even as I just told him not to do something, it would pop into his head and he would do it – not out of defiance, which he was also perfectly capable of, but because he had to put thought into action).
    frustum –
    I am really interested in trying vyvanse myself – unfortunately ritalin costs $4 a month, as apposed to several hundred dollars a month for vyvanse out of pocket. With the ritalin I sometimes get headaches and understand that they are far less likely with vyvanse. But I use what I can afford and deal with it, because I can’t afford not to take ritalin. I started classes just before I went on ritalin and had to leave class a couple times, so as not to create a distraction – mind you I am in my mid thirties.

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  50. I don’t know if ADHD is “real” or not–I often believe it is not, then immediately flash back to my cousin and how we had to pry him off the ceilings (really). His ADD was as real as his jumping out the windows, and I saw this for myself, lots of times… and this was about 45 yrs ago; nothing “trendy” about it, for sure.
    But in the 90s, I did (endless) medical transcription, and the pattern was the same: every autumn before school started, the parents brought notes from teachers–all stating unequivocally saying “this kid is bad and a disruption and won’t sit still” and the parents would show them to the doctor, who would dutifully prescribe Ritalin. Period. Often, there was no discussion of what the kid was like at home, or the parents would *swear* the child was okay at home and didn’t know WHAT strange phenomenon overtook the kid at school. Ritalin, ritalin and more ritalin…it was like an assembly line. We called them the Ritalin appointments and they went on non-stop for about 7-10 days. The kids had been undrugged all summer, but were getting “Ritalin for school”–just like their other school supplies. This is how it played out in real life.
    As a result, I am skeptical… not because I don’t think it’s “real” ((((flashes back to cousin, hanging off the roof)))–but because I think Ritalin is being used for the wrong reasons, to teach children that conformity, discipline and (above all) good grades are the Alpha and Omega of Western Civ.
    One may not become a drug addict, but one *does* learn that enhancing performance with drugs is okay. (And it IS, isn’t it? Depending upon who you are, and the performance that is expected of you.)

    Like

  51. DuWayne Says:

    Daisy –
    I think it is obvious that ritalin is overprescribed. I think it was worse in the late eighties and nineties, but while it has gotten better, it is still problematic. I am hopeful that the development of objective diagnostic criteria will help, but it will be a while before that becomes fully vetted, much less utilized.
    But when it comes to people who actually have attention deficit issues, the drugs can be a life saver. I personally wouldn’t be capable of making it through school without them. And not because they are performance enhancing. Unless you honestly think that using drugs to have rather more focus than a kitten on crack is performance enhancing.
    And there is also the non-performance benefit of ritalin or (presumably, not as well studied) other stimulant therapies. Studies have shown that people with attention deficit issues who take ritalin as a teen are considerably less likely to engage in substance abuse. They are also less likely to have problems with attention deficit symptoms in adulthood, or take medication for it.
    While I am not all that keen on the focus of education and think that we could do much better, a certain level of conformity, discipline and good grades are always going to be an important part of life in western civ – depending what ones goals are. Certainly if one wants to make a decent living, those three will make achieving that goal much easier and much more likely.
    As much as I would like to see education and society deal with kids as they are, taking advantage of the ways their brains work instead of fighting it, that is not the society we currently live in. As both a person trying to compensate and get through school and a parent of at least one child with attention deficit (among other issues) problems, I am less concerned about bucking the system, than I am about doing what I have to to succeed and provide my children with the best possible foundation. I could give a damn about rebelling, when my children’s futures are on the block.
    If ritalin is in either or both of their futures, I am not going to fight it. I refuse to screw up with them, the way my parents screwed up with me. And I would contend that the biggest screw up (with the possible exception of my dad allowing the religious brainwashing) was in regards to my neurological issues. I will most certainly screw up too – parenting is all about screwing up, the goal being to screw up as minimally as possible. But I will do my damndest to screw up a hell of a lot less than my folks did in this context.

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  52. mary d Says:

    I’m a SPED teacher, too, and a parent of a kid who was diagnosed ADHD. There are so many considerations:
    *Ritalin or other meds might help the kid get through the day without hearing, sit down and shut up, or the more polite equivalents that teacher use all day long. This helped me decide to put my child on meds.
    *But often kids with ADD have comorbid learning disabilities
    *or, as someone mentioned, ADD parents who really don’t get it at the parent conference when you talk about structure.
    *or ADD parents who hated school and so doing well in school is not a family value-the single hardest negative factor for schools to try to overcome, in my opinion.
    *then there’s ‘girl-flavor’ (dreamy) and ‘boy flavor’ (chair management problems) ADD– I think this is one reason why girls are less often identified– they don’t drive their teachers crazy.
    *ADD looks different in smart and slightly below average kids. Smart kids with ADD have te cognitive cushion to do ok academically, since teachers say everything at least twice.
    *smart kids with ADD may seem (be) very creative. I know it when I see it- trains of thought may be hard for anyone else to follow, but do make sense.
    *A lot of the reason ADD is a problem is the second curriculum–conforming, hurry up and wait stuff that is inevitable in any situation in which one person manages 25-30 five year olds all day. Sometimes I look at kids having a tough time and know that if they can hang in there and finish school, they will find or create a place that fits them. I did. But it took a long time, and I wish someone had told me.
    *School staff absolutely cannot say the word ADD to parents. We say, distractible, or always in motion, but not ADD. We are not allowed to say directly, ask your pediatrician, or the school district may be liable for the bill.
    *I understand why docs have the sole privilege of prescribing meds (many seem to do so at the drop of a hat, though); but how a doc would be better at making the diagnosis after five minutes than a team of teachers and school psycs who spends every day, all day, with the kid, I don’t know. Though it does defuse tensions between school and parents by bringing in a third party.
    *For my son, taking ritalin was like night and day– 18-20 minutes after he swallowed it, it kicked in– you could almost see it. This was when he was six. Then he grew to be an angry unmanageable 14 year old and we did an experiment involving a mix of sugar pills and ritalin compounded by a pharmacist, with teachers filling out checklists. No one including me saw any difference, so he stopped taking meds.
    *At 17, by which time I thought he would never be a particularly functional person, within a period of six months, he seemed to grow frontal lobes. Could plan and manage longterm tasks, time, money, plan trips– for him what worked was just getting him to that age and stage without being in jail or dead first.
    *Most school people really don’t understand the idea of science, at best know a bunch of sciencey facts, I am sorry to say. That is, don’t know how to observe. I think many docs are the same way.
    *Every case is a single-subject experiment.

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  53. skeptifem Says:

    Adults with ADHD can’t seem to get away from learning what these drugs are all about. The suspicion I am subject to is crazy (and my mom, and my sister). I have to do all this special crap with written prescriptions and extra check ups because the DEA is so concerned that someone *might* get high off of prescription drugs, and my NPs/PAs/Drs do not want to get in any trouble. It sucks when being disorganized is part of the problem with adhd and you have these paper prescriptions that you cannot lose and have to make time to wait for them to be filled and schedule appointments within the right number of days so you don’t run out. It makes me think of how shitty this runaround must be for say cancer patients, who might be prescribed marinol or narcotic pain killers.
    Anyway, none of the women in my family got diagnosed young so I am not sure what kind of effect it would have had on any of us as children.
    I am pretty certain that a lot of the time the teachers suggest that parents have their kids medicated in order to make the kids perform better in school. The value of performing better in school isn’t really explained. I am positive that it does not translate to learning more or thinking more, it just means more obedience. I am not a denialist at all (obviously), I just wonder if there is value in this kind of treatment at that point in life (in a general sense, of course everything should be decided in a case by case basis with families and medical professionals).

    Like

  54. DuWayne Says:

    Skeptifem –
    I actually had issues getting my ritalin filled when I took it to the Costco pharmacy and asked the price to fill it there. I went to Costco, because they could fill my Welbutrin XI for less than a third the cost at my regular pharmacy. I wanted to see if they would also fill my ritalin and xanax for four bucks each – which they wouldn’t. But then this lady starts explaining how they couldn’t fill my ritalin, because I was trying to fill a ninety day supply.
    I take 1.5 10mg tablets, twice a day. Her reasoning was that most ritalin scripts they fill would see that as a daily dose, so I must be trying to get multiple months at a time. I didn’t push it to talking to a manager, because it was too much any which way – as was the xanax, but even after explaining that I am not a small child and thus take a little more than someone who weighs about fifty pounds would, she still wouldn’t have filled it. The only other time I filled it at a different pharmacy, I got “the look.”
    I am definitely much happier dealing with my regular pharmacy, though I hate giving walmart my money. The pharmacists recognize me, a couple know me by name. When I had to go in with scripts for flexeril and once for vicodin, I didn’t get “the look.” Never have gotten it there. It fucking irritates me to be treated with suspicion because I am filling a script written by my doctor.

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  55. red pepper Says:

    While I am not all that keen on the focus of education and think that we could do much better, a certain level of conformity, discipline and good grades are always going to be an important part of life in western civ – depending what ones goals are. Certainly if one wants to make a decent living, those three will make achieving that goal much easier and much more likely.

    Like

  56. Monado Says:

    I’d like to see the drugs being explained better to ADD patients, too, not like, “You’re getting the meds, now start remembering to do things!”

    Like

  57. fix it pro Says:

    Adults with ADHD can’t seem to get away from learning what these drugs are all about. The suspicion I am subject to is crazy (and my mom, and my sister)

    Like

  58. DrugMonkey Says:

    . Her reasoning was that most ritalin scripts they fill would see that as a daily dose, so I must be trying to get multiple months at a time… but even after explaining that I am not a small child and thus take a little more than someone who weighs about fifty pounds would, she still wouldn’t have filled it.
    It concerns me quite a bit that pharmacists do not have it hardwired into their brains that child and adult doses might differ. This should be part and parcel of their error-catching function. no?

    Like

  59. Monado Says:

    In that case, have the Pharmacist call your doctor, using the medical directory if they are not sure they are calling a real doctor. Try using a pharmacist near the doctor, they may even know each other.

    Like


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