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Categories: 2013, February
by Kevin T. Kalikow, MD
PETER PALEY’S MOTHER HAS BEEN DREADING THE PARENT-TEACHER CONFERENCE. She has been getting phone calls about Peter’s disruptive and distracting classroom antics. After the usual pleasantries and a review of Peter’s behavior, Peter’s teacher says, "I’m not a doctor, but Peter’s ADHD really should be evaluated." Ms. Paley knows the code. The teacher thinks Peter should be treated with medicine. In the car heading home, she struggles with the possibility of placing Peter on medicine. She is unsure what she will do and does not know how to approach the problem.
If you are the parent of a child with ADHD, you have probably faced the dilemma of whether or not your child should take medicine. Perhaps the recommendation comes from the teacher. Perhaps the pediatrician has offered to help harness the excess energy of your eight-year-old whose perpetual motion made the routine physical a nightmare. Or perhaps, after hearing that your friend’s child has benefited from medicine, you wonder whether your child would also benefit. Perplexed, you are unsure how to decide.
How do you approach this important question?
Unfortunately, unlike the Academy Awards, parents are never handed an envelope with the answer. In truth, some want the physician to simply decide and tell them what to do. However, in our age of patient autonomy and ready access to information, parents increasingly expect to be, want to be, and should be in charge of that decision. To approach this decision, it’s helpful to understand the decision-making formula that has guided physicians for thousands of years.
But first, a caveat: Deciding is not always easy. Sometimes the path to choose is obvious; other times, it’s not. Choosing the best path requires putting aside the emotions that cloud objective assessment, such as the excessive fear of side effects or unrealistic hope of benefit. This is always difficult when your child’s future is in the balance.
The risk/benefit ratio
Physicians use the risk/benefit ratio to decide on the course of any treatment. If the benefits outweigh the risks, you proceed with that treatment, and if the risks outweigh the benefits, you don’t. I’m going to complicate that formula just a tad. In weighing the risks and benefits of medicine, or any treatment for that matter, one weighs them against the risks and benefits of all other treatments. Whether the alternative treatment you consider is cognitive behavior therapy or biofeedback or removing sugar from your child’s diet, each costs time, money and effort and each should have a measureable benefit.
To complicate this one more tad, all these treatments must be weighed against the risks and benefits of not treating. That is, choosing to do nothing. Deciding not to treat is also a treatment decision and also has consequences. As more information is gleaned from research, doctors have a better idea, although not always a clear one, of the outcomes of disorders such as ADHD. For example, ADHD is associated with risks such as school failure, more frequent job changes, family conflict, cigarette smoking, and driving accidents. Although it is not clear that the use of medicine always prevents these outcomes, parents must always keep this possibility in mind.
The decision to medicate is also complicated by the question of treating the other disorders that often plague children with ADHD. Because ADHD often coexists with disorders such as depression, anxiety disorders, and bipolar disorder, the decision to medicate ADHD might have to be seen in the context of medicating the other disorder. The risk/benefit analysis is still useful, but the analysis is more complicated.
The risks of medicine
So, how do you weigh the risks and benefits of medicine? First, let’s tackle the source of most parents’ anxiety and fear, namely the risks of medicine.
I could write an entire article solely on how to evaluate the various side effects associated with medicine. Evaluating short-term versus long-term side effects. Measuring their probabilities. I could go on. Asking about any medicine’s side effects is certainly important. However, allow me to cut to the take-home message, the question to ask that will put any side effect into perspective. Simply ask, "Is the side effect LIV?" That’s my acronym for lethal, irreversible or very painful—the side effects that give me pause for serious thought before prescribing a medicine.
When Mrs. Simpson tells me that she’s worried that Sydney might lose her appetite if prescribed a stimulant medicine, I share her concern, but I’ll sleep well that night. If Sydney loses her appetite, we can stop the medicine and her appetite will return in a matter of hours. Sydney will not have suffered an LIV side effect. However, if Mrs. Simpson herself has a history of cardiac arrhythmia and reports that the last time Sydney took a stimulant medicine her heart rate exceeded two hundred beats per minute, I worry. A cardiac arrhythmia could quickly be fatal. The Simpsons and I will think long and hard about whether the benefit of medicine is worth the risk of this LIV side effect.
Fortunately, the overwhelming majority of youth are not at risk for LIV side effects from the medicines used to treat ADHD. One of the side effects that most concerns parents, changing your child’s personality, is certainly not LIV. If the medicine is effective, but your child’s usual exuberance disappears, the medicine can be discontinued and your child will soon return to his usual self.
How about measuring the benefit of medicine? Parents and physicians have different ways of measuring benefit. Physicians ask whether the medicine has proven itself better than placebo (fake medicine) in a trial in which neither doctor nor patient knew whether the patient was taking medicine or placebo. This is called a "double-blind, placebo-controlled" study. This is the gold standard for knowing whether a medicine is effective and raises an important point. A medicine should prove itself effective. Just because a medicine is classified in a family of medicines that sound like they should work doesn’t mean it will work.
I recall the 1980s, when tricyclic antidepressants, such as imipramine and amitryptyline, which had been proven useful in adult depression, were used to treat children with depression. When put to the test of double-blind, placebo-controlled studies, these medicines were found to be ineffective in children with depression. These medicines were antidepressants for adults, but not children. It is reasonable to demand that level of proof from any treatment. Do physicians sometimes prescribe medicine that has not been proven to such rigorous standards? Yes, but we certainly feel more comfortable when we can tell parents that studies have proven the efficacy of the medicine being considered.
As a parent, you’re probably less concerned with research studies. Parents are more likely to use the "if the shoe fits, wear it" formula. Namely, "I’m in favor of anything that helps my child without significant risk." That’s a fine formula, but because you never know what’s going to work before you try it, you must always ask yourself. "How likely is this to help my child?" Remember that every treatment has a cost, not the least of which is time, money and effort.
It’s fair to ask your healthcare professional about the likelihood of any treatment working and how that is known. Hopefully, a well-done study can be cited, but sometimes the study has not been done and the doctor’s own experience or clinical lore must suffice.
Parents must also challenge themselves. What am I trying to accomplish? How will my child benefit from taking medicine? ADHD has many faces, each associated with risks. Some are lessened by medicine and others are not. For example, children with ADHD visit the hospital emergency room more frequently than their peers. If medicine decreases the likelihood that Leo will grab the hot frying pan that’s sitting on the stove, then his parents would most likely jump to use medicine because they value that outcome highly. Children with ADHD also have more difficulty with schoolwork, chronic academic failure being associated with demoralization and perhaps eventual depression. If medicine would help improve Ashley’s grades and prevent this progression, her parents might choose to use medicine because they value that outcome highly.
Parents are perhaps in murkier territory when they consider using medicine to treat their child who is doing fairly well in school, but not reaching his or her potential. Every parent wants his or her child to do well, but each has his or her own judgment of what is good enough.
Problems of risk/benefit analysis
Depending on their perspective, parents are vulnerable to four possible problems when using the risk/benefit analysis.
The first is overestimating the benefit of medicine. While medicine clearly diminishes the symptoms of ADHD, it is not a panacea. Even medicated, these children are at greater risk for difficulties.
The second problem is underestimating the benefit of medicine. Despite the protests of the naysayers, ADHD is a disorder that comes with consequences and, while medicine might not improve long-term outcome with certainty, it clearly decreases the painful symptoms in the short-run of a few years.
The third problem is overestimating the risks of medicine. When it comes to the safety of their children, parents become understandably emotional. These emotions should not rule their decisions. Although all medicines have side effects, the medicines that are FDA-approved to treat ADHD are safe and have a very low risk, if any, of LIV side effects.
The last problem, however, is underestimating side effects. We know much, but not everything, about all these medicines. There is simply less information regarding the combinations of medicines that children with ADHD sometimes need to take. And adolescents and young adults who unthinkingly use illicit drugs simultaneously or who share their medicine with their friends who have not been properly evaluated underestimate the risks of medicine.
So, let me leave you with five things to consider when deciding whether to use medicine.
1. Start with a good evaluation by a trusted professional. Many other difficulties can imitate ADHD. These range from seizure disorders to learning disabilities to anxiety disorders to transient reactions to the stresses of life. Before concluding that your child requires treatment with medicine, let a trained professional make the correct diagnosis.
2. Consider how your child might benefit from medicine. Does the dysfunction you want to treat merit treatment with medicine or will other treatments, such as behavioral interventions, suffice? Will your child benefit academically? Will your child benefit socially? Will the medicine decrease the risk for danger? Will the benefit be immediate or long-term? Can your child benefit from medicine, then stop it before the possible onset of the side effects you fear?
3. Get accurate information regarding side effects. The Internet is chock full of information, some accurate and some not. Your healthcare professional should be able to give you a list of side effects, their rough probabilities and the course of action should they appear.
4. Don’t feel rushed to make a decision. Treating ADHD is not a medical emergency. You have time to do your research and consider your decision.
5. Know that your decision is reversible. You can change your decision at any time. If your child does not benefit from a trial of medicine, the medicine can be stopped. If your child experiences intolerable side effects, the medicine can easily be discontinued.
FEW DECISIONS CHALLENGE THE PARENT OF A CHILD WITH ADHD LIKE THE DECISION TO MEDICATE. Calmly evaluating the risks and benefits of medicine and weighing them against those of other treatments and of leaving ADHD untreated will allow parents to make the best decision for their child.
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