When Experts Disagree

by Marie S. Paxson

If you’ve been following CHADD’s recent blog entries, you are aware of the recent attention paid to the American Heart Association’s recommendation that children and adolescents using medication to treat AD/HD should consider getting an EKG to rule out a rare but serious heart defect. Others in the medical field felt that this recommendation was too assertive and that a physical exam and detailed medical history would suffice. Both sides of the issue agree that a registry should be set up so that there is firm data on exactly how many people are affected when AD/HD medication is used by those with an undiagnosed heart defect.

So as an individual or family member affected by AD/HD where does this leave you? (spoiler alert - I have no answers to this question). The standard advice is to check with your physician. But will he/she know? What is his/her background and training for patients with AD/HD? The answer may vary, but most likely they received significant training on heart function, so that is reassuring.

By now, you have probably experienced other times in your life when experts disagreed. In my family of four, for example, at one time we had two psychologists, a psychiatrist, a pediatrician, and a family doctor helping us with AD/HD-related issues. It didn’t happen often, but there were times when these trusted individuals weren’t on the same page about how to address some of our family’s issues.(Let’s face it, five people can’t agree on pizza toppings, let alone something this complex). Sometimes I could tell by their body language that they weren’t onboard with the other team members, other times they flat-out told us they didn’t see the value in following the other expert’s recommendation.

But I recall the words of my psychologist: “Marie, your family is not a do-it-yourself project!” and she encouraged me to assemble a supportive, knowledgeable team to help with this journey into the unknown. I have to admit my first thoughts upon hearing this were “We can’t be that bad, can we?” But then I realized that no one would have THIS many professionals on her speed-dial if things were going smoothly.

I guess it is a fact of life that those whose opinions we value won’t always agree with each other. So here is what I do when this situation causes confusion for me. I ask myself some questions: will anything negative happen if I take the time to sort things out for a bit? Sometimes new information and facts surface and that will help me make a better decision. Am I catastrophizing – are my concerns reasonable or am I projecting future doom? I learned to catastrophize after so many things went WRONG. Now at least, I recognize when I’m in that zone. Is there any partial action I could take that might be helpful? Is one piece of advice easier to follow than the others? I check with others who are going through a similar situation to get their opinions. And lastly, is anything about this keeping me awake at night? If so, that is what I address quickly.

While professionals will disagree, one question you should ask any physician you are considering – are you familiar with and do you practice the AD/HD evidence-based guidelines published by the American Academy of Pediatrics and American Academy of Child and Adolescent Psychiatry? At least you can determine their initial understanding of the diagnosis and treatment standards within the medical profession.

Looking for physician guidelines on the treatment of adult AD/HD? (The American Heart Association EKG recommendation pertains to children and teens.) Stay tuned—CHADD’s Professional Advisory Board will be reviewing current guidelines and we will have more information on this in the future.

Marie S. Paxson

Marie S. Paxson is the president of CHADD.

Tips for Surviving a World Filled with (Mis)information: Part II

It’s Friday, 5:15 PM. As the CHADD staff is preparing for the weekend, a call comes in from a reporter seeking comment on an embargoed press release that will be widely disseminated on Monday. How should CHADD respond?

This scenario is more than hypothetical. This really happened several weeks ago, when the American Heart Association released a statement urging that children undergo full cardiovascular monitoring, including EKGs, before being treated with medication for AD/HD.

How would you have responded? Would you have quickly taken the most cautious stance and provided the best information you had available at the time? Would you have stepped back and not responded, thereby running the risk that other people or (anti-mental health) groups would monopolize the coverage and provide completely inaccurate information?

These decisions are never easy, and CHADD always takes its public statements seriously. In this particular case, we came out with the most cautious statement possible based on the limited information we had on the topic at the time. We said the AHA position would make an already safe process even safer. But as many experts began weighing in with analysis, based on the scientific findings, many of them concluded that the AHA’s recommendation was perhaps overreaching and not completely cost-effective.

Even the AHA scaled back to some degree on its position by working with the American Academy of Pediatrics on an erratum and media advisory. The AAP developed its own statement that ran counter to the original AHA statement. At CHADD, we’re working with our professional advisory board to develop a position on the issue, and there continue to be many people in the field with varying opinions on the topic.

This is the nature of the beast we deal with. Given the demand of the news media’s deadlines, CHADD leadership often has to act quickly, releasing the best science-based information that is available about a given topic when the media call. But sometimes, as more information and expert analysis come in, it is necessary for us to change (hopefully ever so slightly) our position. We realize this can be frustrating and confusing to you and others, but it is necessary.

It is important to remember that when it comes to many of the issues we deal with in this arena, information is seldom static. Typically, positions and statements do evolve over time as more information comes in. You may have noticed that there are some people in the news, many of whom have anti-mental health care agendas, who are very quick to draw definite and sweeping conclusions about new research. CHADD, on the other hand, is very careful to release statements that are nuanced and cautious about drawing certain conclusions. This is because we understand that the interpretation of research can change when it’s placed in its proper context. We also know that, as additional research on the topic is conducted, we get a fuller picture. As Abraham Lincoln once said, “Yes, you’re right, I have changed my position. I’d like to think I am smarter today than I was yesterday.”

We rely on our professional advisory board consensus interpretation of the published science. Sometimes the published science is stable for a period of time, but many of the media explosions are interpretations of a new study of science—with little to no context or history—just a headline beginning “Study Declares.” CHADD’s soundest statements are our What We Know papers, developed over time by the consensus of our professional advisory board, considering the entire body of published science (see the Web site of CHADD's National Resource Center on AD/HD). As CEO, responsible for accurate interpretation of the published science, and as a father of a son with special needs, I get annoyed by this media need for an immediate "headline of controversy" rather than a more thoughtful analysis of what the research actually means. But media headlines dominate our daily lives.

When the follow-up to the Multimodal Treatment Study on Children with AD/HD was released several months ago, there were media reports saying the study proved that medication loses its effectiveness. Yet, many members of the media failed to explain that people taking part in this longitudinal study were no longer receiving the kind of care that they received at the beginning of the study. The intensity of treatment had changed for many of the people who had been on medication. In some cases, some people had gone off of their medications, while others, who had not been on medications when the study began, started taking them. The public did not receive a full explanation of the study's follow-up findings; instead it was treated to a simplistic interpretation of them. These issues were clarified in the April 2008 issue of CHADD's Attention magazine.

The takeaway from all of this is that it’s important for you, as a news consumer, to hold off on drawing conclusions just because you’ve received some information from the media or even a reputable organization. Continue to visit reputable sites to see how these stories are evolving. If you have concerns about how the stories will impact you or your children, then we encourage you to talk with your health care provider.

But, most of all, it is important to us that you understand why CHADD at times expounds upon an issue, and at other times shies away from speaking in absolute terms and in sound bites. We're disseminating information that is accurate and we're waiting for the best research to inform our efforts. Keep visiting the Web sites of CHADD and the National Resource Center on AD/HD. We're constantly producing information on relevant topics in the news.

May you have the best of luck and all the best resources the next time you're trying to get to the bottom of a story about AD/HD!

Clarke

A World Filled with (Mis)Information

Recently a Web site promoting natural health alternatives and healthful foods posted an article questioning the safety of medications used to treat attention-deficit/hyperactivity disorder. The article made unsubstantiated claims based on flawed interpretations of various scientific data.

Among its many false assertions, the article used a recent brain study to claim that stimulant medications actually stunt the growth of children’s brains. That is despite the fact that not one person in peer-reviewed, published science, including the researcher himself, has made that deduction based on the research findings.

The research cited showed that there were children with AD/HD who experienced a delay in brain maturation when compared to those without the disorder. The takeaway—and one always has to be careful with takeaways based on just one study—was that delay in brain growth is a product of the disorder, not caused by its treatment.

The article also claimed that a recent follow-up to the landmark Multimodal Treatment Study of Children with AD/HD (MTA) concluded that medication loses its effectiveness after a period of time. Yet, according to the lead researchers on the MTA, this was not necessarily the conclusion from the follow-up study’s findings. The study did affirm the need for continuous supports and interventions for treatment success to be maintained.

Because I value you as a reader, I will not continue to burden you with the unscientific misinformation that was presented in this article. The bottom line is that this author has a viewpoint to sell. He advocates diet elimination and supplementation plans as a way to treat AD/HD. But the scientific research that has been conducted in this area has found no evidence that eliminating foods from or adding supplements to one’s diet makes any difference in the treatment of AD/HD, a neurobiological disorder. Research has demonstrated the potential value of Omega 3 fatty acids, whether in your diet or with supplements.

Research has shown that a combination of education adaptations, parent training, behavioral intervention strategies, education about the disorder, and medication are the most effective ways to treat the disorder. There is no denying the importance of diet and exercise in maintaining a healthy lifestyle. But there is no evidence, at least so far, that diet makes any difference in treating AD/HD.

I plan to dedicate the next couple of blog entries to explaining how we can all become more discerning in evaluating the information we receive. I also plan to discuss the role CHADD plays in disseminating accurate and science-based information. We will discuss the media’s constant need for a new headline, and how this frequently leads to more misinformation. I hope you will continue reading.

Clarke

Food Dye and Behavioral Issues

by Bryan Goodman

There are stories in the media today about the connection between food dye and behavioral issues. We realize some people may have questions about how food dye affects AD/HD symptoms. CHADD’s position on issues similar to this one is best expressed in the What We Know Sheet #6, published by CHADD’s National Resource Center on AD/HD. That fact sheet reads as follows:

Dietary Treatment/ Nutritional Supplements
Having a healthy, balanced diet is key to having a happy and healthy life. According to the Centers for Disease Control and Prevention (CDC), eating properly can help lower the risk for many chronic diseases, including heart disease. In addition, exercise and physical activity are recommended as part of an overall healthy lifestyle.

For more information on proper nutrition, click here. Dietary guidelines from the U.S. Department of Health and Human Services (DHHS) can be found here.

Dietary treatments eliminate - or take out - one or more foods in someone's diet (for example, sugar, candy and food with red dye). The idea is that being sensitive to certain foods can cause symptoms of AD/HD. Careful research, however, has not supported this treatment.

Nutritional supplements and large doses of vitamins add things that some believe are missing in a diet. Some people think diet supplements improve symptoms of AD/HD. Scientists have found no proof of this idea.

You can read this fact sheet in its entirety here. As always, CHADD encourages individuals to consult a medical professional when making decisions about treatment options for AD/HD.


Bryan Goodman is CHADD's director of communications and media relations and the executive editor of Attention magazine.

Finding Your Own Arena

by Bruce Jenner

I am thrilled that I will be the keynote speaker this fall at CHADD’s 20th Annual International Conference on AD/HD. I have long been a big supporter of CHADD.

When I was growing up in the 1950s, there was no national organization working to raise awareness about people with different learning styles. Back then children with special needs failed in school, dropped out, or squeaked through with terrible self-esteem.

I struggled early on in elementary school. After going through testing, I was told by school officials that I had dyslexia. (I also struggled a great deal with attention issues, but AD/HD was not on anyone’s radar at the time.) Knowing I had dyslexia did me no good, however, because I was sent back to class with the expectation that I would do well without accommodations.

It should come as no surprise that my troubles in school began to take a toll on my self-esteem. Then something miraculous happened in fifth grade. I participated in a race and won. I was the fastest kid in my class! I had found what I call my “little arena,” and my self-esteem began to improve.

I often tell people that struggling with dyslexia has been my greatest gift. If I had been average, doing fine in school, I wouldn’t have needed sports. There was always that little dyslexic kid in the back of my mind who was going to out work the next guy.

I look forward to talking about my life experiences at CHADD’s conference. My hope is that attendees will hear my story and walk away with a better understanding of how they can build self-esteem by finding their own “little arenas.” I hope to see you there!


Bruce Jenner won the gold medal in the decathlon at the 1976 Summer Olympics. His willingness to talk about his own struggles with a learning disability has helped shape how society views learning disabilities and mental disorders.

CHADD’s International Conference on AD/HD will be held this year from November 12-15 in Anaheim, California. Registration begins in June.

Cardiovascular Monitoring and AD/HD

Further Thoughts on the Recommendations

by Andrew Adesman, MD

Though the air is starting to clear, the dust has not yet settled on the issue of cardiovascular monitoring of children with AD/HD! What do I mean by this?

On April 23, the American Heart Association issued a statement recommending cardiovascular evaluation and monitoring of children and adolescents being treated with medication for AD/HD. The AHA not only suggested that a careful history and physical examination be done, it also recommended for the first time that all children and adolescents with AD/HD should have an EKG done prior to treatment with stimulant medication.

This recommendation created considerable concern among parents and controversy among professionals. In a blog entry posted on the CHADD website on April 23, I raised several concerns about this recommendation and its implementation. In the weeks following the release of the AHA statement, experts from the fields of pediatrics, child psychiatry, and even pediatric cardiology have raised serious questions about the scientific basis for the AHA’s recommendation to do electrocardiograms in all children and adolescents prior to treatment with medication for AD/HD. These experts not only shared my concerns about the logistical and practical issues of timing, cost, availability, and accuracy of EKGs, they questioned the very rationale for doing EKGs in children for whom there are no known cardiac risk factors. (Note: There is general agreement that children with certain specific clinical cardiac risk factors should have an EKG and/or evaluation by a pediatric cardiologist.)

In response to heated criticism from various medical experts, the AHA modified its recommendation. On May 15, the AHA released a Media Advisory (in conjunction with the American Academy of Pediatrics) to “clarify” its recommendations. Whereas the AHA originally recommended an EKG for all children with AD/HD prior to treatment with medication, they now state that it is “reasonable for a physician to consider obtaining an EKG as part of the evaluation of children being considered for stimulant drug therapy, but this should be at the physician’s judgment, and it is not mandatory to obtain one.... Treatment of a patient with AD/HD should not be withheld because an EKG is not done.”

This revision to the AHA position is a welcome modification and will reduce the sense of obligation that many physicians have been feeling with respect to performing EKGs on their patients. As a developmental pediatrician specializing in the evaluation and management of AD/HD, I can attest to the many logistical difficulties associated with getting EKGs done quickly and the clinical uncertainty that results when EKG findings are not completely normal. (As noted in the original AHA paper, there are many EKG findings that are variants of normal or mildly abnormal but are not clinically concerning from an AD/HD treatment standpoint.)

The AHA recommendations to do universal EKG testing on children with AD/HD prior to treatment with medication would have led to a multitude of false positives (erroneous reports of abnormalities in children) and undue clinical concern as well as a considerable cost and inevitable delay in therapy. It is fortunate for all that the AHA has backed away from its original recommendation.

It is important to note that the American Academy of Pediatrics has not endorsed the AHA statement in either its original form or its revised form. The likely reason for this is that, in their recently published, evidence-based guidelines for evaluation and treatment of children with AD/HD, the AAP did not recommend that EKGs be done in individuals if there are no cardiac concerns or risk factors. In short, whereas the AHA is recommending that an EKG be “considered” for all children with AD/HD prior to treatment, the AAP has thus far recommended that an EKG only be done where there are specific clinical concerns to justify it.

If the AAP stands by its previous recommendations, then its position will be “at odds” with the AHA’s revised statement. Although individual experts and medical organizations can reasonably disagree, there are several unfortunate consequences from such a public difference of opinion. For example, clinicians and patients will not be certain whose recommendations to follow. This will undoubtedly lead to inconsistency among providers regarding EKG screening. It is also quite likely that health insurance companies may chose to not cover the cost of an EKG in low-risk children if the AAP itself does not recommend EKGs for these patients. This would mean that there could be a significant out-of-pocket expense for a test that is recommended by some experts and clinicians but not others.

To the extent that the AHA is making recommendations for EKG screening that go well beyond previous recommendations of the AAP, they may find themselves wanting to “clarify” (i.e., retract) one sentence in their May 15 Media Advisory. In that document, the AHA clearly states that “the child’s physician is the best person to make the assessment about whether there is a need for an EKG.” How ironic! When it comes to determining the need for an EKG in a child with AD/HD, the AHA recognizes pediatricians as being the expert on a case-by-case basis—yet, they reject their collective judgment when it comes to developing generalized, evidence-based guidelines for evaluating and treating children with AD/HD.

Although the AHA policy revisions help to clear the air, I don’t think the dust can start to settle until the AAP makes a public statement about this issue. Until then, clinicians and families will have to pursue safe and effective treatment in the face of imperfect knowledge and conflicting opinions. Despite potential differences of clinical perspective among experts, I think it is important to remember that both the AHA and the AAP recognize stimulant medication as a safe treatment for children with AD/HD who have no risk factors for cardiac problems, and that even children with cardiac risk factors may be considered for treatment with stimulant therapy once an appropriate cardiac evaluation is performed. That is the heart of the matter!


Andrew Adesman, MD, is chief of developmental & behavioral pediatrics at Schneider Children’s Hospital, part of the North Shore-Long Island Jewish Health System in New Hyde Park, New York. A former member of CHADD’s board of directors and a current member of its professional advisory board, Dr. Adesman is recognized nationally for his clinical expertise in child development. He has authored many articles on AD/HD and co-authored the book Parenting Your Adopted Child.

Recovery, Hope, and Self-Esteem

This weekend I attended the annual scientific advisory board awards luncheon of the Depression and Bipolar Support Alliance, and also discussed with my son’s school mentor the impact of the lack of self-esteem has on his outlook and confidence.

The theme of the DBSA luncheon was to review recovery tools available online, 24-7. DBSA is increasingly using video to provide these tools. On their Web site, “Recovery Steps” is a major link. DBSA equates recovery with wellness.

The President’s New Freedom Report on Mental Health advocates the transformation of the nation’s mental health system to focus on recovery. The report and the DBSA link to the Substance Abuse and Mental Health Services Administration definition of recovery: “A journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential.” For two years I have been thinking off and on about how the mental health concept of recovery, the fundamental principle in reforming the nation’s mental health system, applies to AD/HD and to my 17-year-old son with special needs. The CHADD professional advisory board has not yet focused its concentration on this question, but we will over time.

The SAMHSA National Consensus Statement on Mental Health Recovery identifies ten components of recovery. I will only focus here on one aspect of recovery—hope.

Hope is a focus on a “better future–people can and do overcome the barriers and obstacles that confront them.” Hope is internalized but can be fostered by peers, families, friends, and others. To SAMHSA, “hope is the catalyst of the recovery process.” During the past two weeks my son has been upset with some peers’ criticism of him. He is highly sensitive; criticism takes a life of its own and becomes a focus on the negative, rather than a focus on the positive.

My son’s mentor believes that my son’s sensitivity is heightened by low self-esteem and low self-confidence. Robert Brooks, PhD, has emphasized at CHADD conferences over the years the need for each of us to have and use our "islands of competence." I have always used Brooks’ approach to emphasize with my son his strengths, while not exaggerating. My March 20, 2008 blog—“Self-esteem, Bonding, and Enjoyment”—focused on my son’s strengths. But offsetting strengths are the built-in doubts we all have, and that people with special needs may have even more of.

At the DBSA luncheon, consumers used the following words to describe their success in moving towards recovery—trusted, loved, depended on, understood, healthy, in control, and inspiring hope. My son’s mentor observed that self-esteem and confidence are “earned” through lived experiences. I wish to think that they are “developed” through life experiences. Within each of us is the memory conflict between positive experiences and negative experiences. Enhancing the positive experiences and reducing the frequency of the negative experiences is an objective. You can’t fake this—it is an internalized feeling. But hope and self-confidence can be fostered. It is much easier for me to stay focused on the positives, but life is this balancing act between the positive and the negative. The more negative experiences one has, the more difficult to have hope. (Not discussed here is the literature on resilience.)

CHADD will continue to brainstorm, think about, and examine the published science to conceptualize how the concept of recovery applies to a lifetime learning and living challenge called AD/HD. Using the SAMHSA definition, we know it is a journey of lifelong duration. We know that one has to “live a meaningful life.” Our role as parents, partners, and advocates is to assist our child or partner in achieving his or her own potential. (There are nine other interrelated components to recovery, according to SAMHSA, that will not be addressed here.)

Your thoughts, your experiences, and your approach can help CHADD more effectively think this through. Please share your ideas on how the mental health concept of recovery applies to living with AD/HD. Thanks for your time and sharing.

Clarke