Welcome to my blog, which speaks to parents, professionals who work with children, and policy makers. Through stories from my behavioral pediatrics practice (with details changed to protect privacy) I will show how contemporary research in child development can be applied to support parents in their efforts to facilitate their children’s healthy emotional development. I will address factors that converge to obstruct such support. These include limited access to quality mental health care, influences of a powerful health insurance industry and intensive marketing efforts by the pharmaceutical industry.

Tuesday, March 13, 2012

Behind the Scenes Look at ADHD Treatment

Recently I went to a talk given by a local "ADHD (attention deficit hyperactivity disorder) expert" to a group of primary care pediatricians. The aim of the talk was to guide these practitioners in doing "ADHD evals" given the time constraints of primary care practice.

"Its all about the rating scales," he said. "You need to train your staff to give out the right scales. The key to working kids up is getting the scales done ahead of time. Nothing happens in the office."

This doctor proudly displayed his version of the main rating scale, the Vanderbilt, which he has divided into two time slots, because "kids have different symptoms at different times of day." Evaluation and treatment of ADHD consists primarily of scoring rating scales, making a decision to use medication, and once the decision is made, having follow-up visits every three months to adjust medication dose according to symptoms and side effects.

One pediatrician, someone for whom I have great respect as a clinician, was alarmed about a 5-year-old who was placed on a very high dose of medication by another doctor. When I asked her what was going on in the child's life that might cause him to have so much trouble, she didn't know. She had changed the medication, which did in fact improve the child's symptoms. Her approach is the standard of care in pediatrics.

In other areas of medicine, we treat the underlying cause, not just the symptom. In treating bacterial pneumonia, for example, we use an antibiotic, not a cough suppressant. The Vanderbilt lists symptoms of problems with regulation of behavior, emotions, and attention, which together may be labeled as ADHD. The question should be not “How do we control the symptoms?” but rather “What is making self-regulation difficult for this particular child?” followed by “What can we do to help promote self-regulation?”

Recently I saw several children who had been diagnosed with ADHD but medication "didn't work". One mother told me about her own struggles with untreated depression. Another child spent weekends with an actively drinking alcoholic father. A third child quietly spoke with her mother of being frightened when she pulled her hair and hit her.

Nowhere on these rating scales does it ask about family history or life stressors. According to the current standard of care it is possible to diagnose and treat ADHD without ever learning about any of this history. Detailed family history (see previous post), as is well described in the book A Lethal Inheritence, is essential to diagnostic evaluation. In addition, detailed early developmental history may reveal significant sensory processing problems that have been unrecognized.

When I have written about ADHD in the past, I usually get a number of angry responses from parents who say everything is fine in their family and I shouldn't blame them for the problem. In my experience, about 10 % of kids seen for "ADHD eval" have what I refer to as "straightforward ADHD." They have symptoms and an extensive family history of inattention and/or hyperactivity with no other issues. If you are in that 10%, this blog post is not about you.

Giving a list of therapists does not solve the problem, because the child is usually the "identified patient." Family therapy can be an important component of treatment when a child struggling with self-regulation, as is well described in the recent book, Suffer the Children: The Case against Labeling and Medicating and an Effective Alternative. Furthermore, once a child is placed on medication, his behavior is "better" for the short term and the motivation to do the more challenging, time intensive work to uncover the cause is lost.

The term "ADHD eval" implies only two options- a child does or does not have ADHD. It leaves no room for curiousity about the meaning of behavior. Then there is the term "co-morbidity." This simply offers the opportunity for more labels without exploring the cause of symptoms.

There is a reason why, as one of the pediatricians at this presentation bemoaned, a parent may say, "by the way" just when when a doctor has his hand on the doorknob to leave. It takes time to develop sense of safety and trust to be able to say what's really important.

Fortunately I work in a practice that is open to a different approach. Here are some initial changes I propose:
1) Schedule the visit as "evaluation of problem of attention, behavior and emotion," or more simply "behavior problem,"rather than "ADHD eval"

2) Have a minimum of two 50 minute visits for an evaluation

3) See parents alone without the child for the first visit. Aim to include both parents whenever possible

4) Goal of initial evaluation is to get detailed family and social history, and to offer parents an opportunity to be heard. Very often the parent and/or couple need support and possibly referral

5) Medication may be considered for an older child if he is unable to learn or function in a social environment without it. Equal attention must be given to other interventions, including addressing diet, sleep, and physical activity
Such an approach involves a change in expectation on the part of parents, teachers and clinicians. Parents are often under tremendous pressure from teachers to get a prescription for medication.

Stanley Greenspan's book Overcoming ADHD: Helping Your Child Become Calm, Engaged, and Focused--Without a Pill offers an excellent holistic approach that is founded in quality scientific research. One key component of his treatment is to support "reflective thinking." This involves helping a child to recognize both his strengths and challenges, and to develop strategies to manage his own unique vulnerabilities.

"We don"t have time" is not an acceptable answer. Changes must be made in our healthcare system to insure better reimursement for time spent listening in this way, and to improve access to quality mental health care services.

This is child's life we are talking about. If the root cause of the problem is not addressed, there may be years of medication adjustment until something bad happens- car accident, school failure, violent crime, prison. If I sound alarmist, it is because I am alarmed. The current standard of care of ADHD treatment, particularly now that diagnosis is extended down to age 4, effectively silences huge numbers of children. We need to give these children a voice.

9 comments:

  1. This is an important contribution, Claudia. Thank you!

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  2. Dr. Gold - great post!!

    One more point: Most of these so-called "rating scales" are designed for two purposes:

    1. As screening measures. Screening measures are DESIGNED to have a high rate of false positives. They are meant to screen out people who clearly do not have a disorder so the doc does not have to spend time asking for more history.

    In other words, if the screen is negative, the chances are great that the disorder is not present.

    If it's positive, it does NOT necessarily mean that the disorder IS present. In that case, one needs to take a complete biopsychosocial history as you point out.

    2. To measure CHANGES in symptomatology in someone already diagnosed, not to make a diagnosis in the first place.

    If the measures were that good, our secretaries would be excellent diagnosticians, and there would be no need for physicians at all!

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  3. I have now put two links from you on my Facebook page for "Buzz: A Year of Paying Attention" -- really respect your perspective! www.katherineellison.com

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  4. I want to thank you for a great piece. Our daughter was diagnosed with attention issues in 2nd grade. She had always been a tigger-like child full of enthusiasm and energy, but suddenly her self-esteem was plummeting. The neuropsychologist called her "fascinating" and strongly suggested we avoid meds. Instead, we cracked down on sleep (at least ten hours), diet (limited sugar, more protein in the AM, no gluten and limited dairy), routine, lots of exercise and limited screen time. She is fully equipped with all sorts of fidget toys in class, too. You would be amazed at the change in her. She didn't need medication, she needed a different lifestyle and scaffolding.

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  5. I agree with just about everything you say here, except for when you claimed "In other areas of medicine, we treat the underlying cause, not just the symptom. In treating bacterial pneumonia, for example, we use an antibiotic, not a cough suppressant."

    That may be (somewhat) true for acute conditions, but not at all true for most chronic conditions. Treating hyperlipidemia with statins, HTN with antihypertensives, or even mild diabetes with biguanides are all examples of treating the symptom rather than the underlying cause. To treat their underlying causes would require the physician to focus much more on "lifestyle" issues such as exercise, nutrition, self-regulation, etc. Which of course, all doctors should be doing much more of, rather than just throwing meds at the problem.

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  6. Thank you so much for writing this. I am a clinical psychologist and I am often referred children for "ADHD evaluations." As I always tell families, ADHD is a diagnosis of exclusion. I usually have to do neuropsych testing, learning disabilities testing, and a semi-structured clinical interview for DSM to determine what is - and is not - going on. Many of the insurers pressure pediatricians, psychologists, and psychiatrists to diagnose ADHD solely on the basis of a rating scale. As one of the previous posters noted, rating scales are screening tools - that's it. And a child can display what looks like inattention, hyperactivity, and/or impulsivity for any number of reasons - speech-language delay, posttraumatic stress disorder, other anxiety disorders, depression, hearing impairment, dyslexia, even giftedness - and the list goes on. The idea that it's "cheaper" and "better" to assume ADHD first and give pills and then if that doesn't work, investigate further later, is a popular and I think dangerous one. Yes, these meds do work well for some kids who actually have ADHD. I have no issue with that. The issue I have is that I get sent SO many children who have already been on every stimulant med under the sun, and then lots of other psychiatric meds, without anyone ever bothering to make a careful diagnosis.

    Claudia B Rutherford PhD
    Licensed Psychologist HSP
    South Deerfield, MA

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  7. I also want to thank you for your blog. I was recently diagnosed with ADHD (I'm 33) and I do believe I'm one of a very small number of people with "true ADHD". It certainly explains a great number of things about myself and my father's family.

    The more I learn about ADHD and its treatments, the more thankful I am that I was not medicated as a child.

    As an adult I can tell my doctor if a dose is too high or a medication is not working for me, and I can decide not to take something if I don't like it. More often than not it seems children are not able or allowed to voice such concerns, or are ignored if they do.

    Also, as an adult I am able to formulate a comprehensive treatment plan, that includes coaching and lifestyle changes, and I can choose to not include medication in that plan if I wish. "Pills do not teach Skills" and skills are what are in shortest supply for me.

    Yes, my untreated ADHD has economically hindered me, but I am happy and emotionally well adjusted despite this, thanks in part to parents who loved me for me. I would happily choose my life of chronic underachievement over a childhood filled with psychiatrist appointments and medication.

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  8. This is a subject that I spoke about at a urban focuse group years ago. I stated that early intervention could help with self medicating with street drugs by children. I often want to ask them what is hurting you? I have worked with special needs youth that have this same issue.

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