Wednesday, July 2, 2008

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.


Anonymous said...

Great advice--compassionate and practical--from one who has obviously walked the talk.

Thanks Marie. CHADD is so fortunate to have you as its new president. We're looking forward to hearing more from you.

Anonymous said...

I hope that all of you hear the humor in Marie's column and recognize that while she is making us laugh and see ourselves in her blog, that her family has not had a easy time of it either. So give her a pat on the back, or a hug if she knows you well enough, the next time you see her! She is all of us......

Pam G. said...

Marie, Your very first published comments as our new President and
as I knew you would, you are stealing hearts already! Our members need to know that our highest leaders have experienced the same challenges and heartaches that they experience. It is HUGE of you to open your heart and share private family experiences. But then those of us who know you, are not surprised. Outwardly you give an impression of reserve and quiet. We who know you, know just how loving and caring you are.

This is going to be a monumental year for CHADD growth!

Pam G.
WA state

Anonymous said...

Humor is our method of choice for dealing with a tense situation. I see an improvemnet in most situations when a bit of comedy enters the equation. It reminds us that not everything should be a struggle. Thanks for the dedication.

Anonymous said...

Where do I begin? I'm 51 years old and I finally see that I have several characteristics. Three out of my four children have AD/HD I had breast cancer and my doctor gave me ritilin 5mg three times a day. I could not make it through the school day. While taking this medication I realized that what I thought was depression, for which I have been treated for 30 years is not. I am nervous to go to my family doctor afraid that I'm too old to be treated for this. Am I too old? I look at my life and I see that I need help. How do I begin or should I leave this alone?