Wednesday, May 28, 2008

Finding Your Own Arena

Bruce Jennerby 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.

Wednesday, May 21, 2008

Cardiovascular Monitoring and AD/HD

Further Thoughts on the Recommendations

Andrew Adesman, MDby 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.

Tuesday, May 6, 2008

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.