TO MEDICATE OR NOT TO MEDICATE
By Gerard A. Ballanco, M.D., FAAP
Parents, teachers, public health officials, physicians - in fact, anyone who is awake - is aware of the increase in the use of stimulant medication for children that has occurred in recent years. The use has doubled since the beginning of the decade. Are we opting for the easy fix to the detriment of children or is this increase appropriate? Are we helping the short term but delaying the development of personality and adult stability? Are we helping to prevent debilitating failure?
No one should tell parents how to raise their children, nor tell teachers what to do in their classes. It is appropriate to offer accurate information, suggest a ranking of available options, and help support the choice. If the choice, whatever it is, does not work, the original options need to be reconsidered or refined on the basis of this experience. This essay is to offer information about some aspects of attention deficits and stimulant medication from the perspective of a general pediatrician.
There are a number of different voices being raised in the medicine debate. The Church of Scientology recently published a monograph on the subject of medication for mood and behavior problems. It is a biased, non-scientific tirade with little room for tolerance of other opinion. The makers of "alternative" drugs and non-standard therapies publish sensational scare tactics on the Internet to promote their products with no scientific evidence for effectiveness. Parents, teachers, therapists, and physicians may demand a "trial" of medication without willingness to go through an appropriate investigation of need or exploration of options. The medical and educational communities are learning more and more about attention deficits and what does and does not work.
Under most circumstances of illness or discomfort, parents are delighted to find out that there is a medication available to help their child. There are some questions about suggested treatment, but relatively few unless the medication is intended for long-term use. When stimulants are suggested, however, accuracy of diagnosis, alternative treatment options, effectiveness of medication, duration of therapy, and side effects are quickly questioned. There is often a mixture of worry about what the mediation may do and relief that something is available to help the child. Society and family prejudice against stimulant medication is softening, but still exists.
Stimulants for attention problems have been used for over fifty years. They may be the most studied substances in the history of medicine. They are effective in 80-90 percent of people with attention deficits. The cost is reasonable, dosage adjustment is easy, and, usually, the benefit is clear. If side effects occur, they are, usually, easily managed. Once the correct dose of medication is established, adjustment of effective dosage is infrequently necessary. In fact, if frequent adjustments (two to three times in a year) seem to be necessary, something is wrong-wrong medication, wrong diagnosis, something is wrong, and reevaluation is necessary. An on-going study by the National Institutes of Mental Health demonstrates that medication is a most important component of successful management of children with ADHD.
Does stimulant medication used to help a child with attention deficits lead to drug abuse? Does it deny the child the opportunity to develop a sense of responsibility? Does the labeling of a child as having attention trouble and taking medication adversely affect opportunity? These are frequently asked questions.
Individuals with diagnosed ADHD have a higher incidence of illegal drug use, alcoholism, smoking and risk taking behavior than do matched peers who do not have this diagnosis. This is especially true of individuals who show significant defiant behavior. Perhaps surprisingly, people with ADHD do not abuse the stimulant medications; they use and abuse other drugs. The lack of abuse by individuals with attention problems makes sense since stimulant medication does not make them high. It simply helps them to focus better and think about what they are doing or are about to do. It appears that the use of stimulant medication does not influence a person to use or abuse other substances. It is more the condition itself, especially if the child has oppositional or defiant behavior, which points to that path. That certainly does not mean that everyone with attention problems or oppositional behavior will end up abusing drugs.
Developing a sense of responsibility is something that each person does at his or her own pace. It comes from recalling and internalizing values and the successes and failures that we experience throughout life. The critical element in developing responsibility is that we must be able to reflect on what we do before we do it, compare the contemplated action to past actions in similar circumstances, and sort of anticipate the possible outcomes before choosing what to do. People with attention deficits often do this inconsistently. People who are not really paying attention may not find many tasks that merit this kind of reflection. Some people don't have the mental energy to carry through on tough tasks.
Without success, the energy and motivation to do hard work is elusive.
The elements of attention deficits make development of responsibility very hard. It does happen; but it happens more slowly. Mistakes are repeated, much more so than usual. It is a painful process learning how to manage an inattentive brain; but it happens. Strategies, spouses, and secretaries are parts of the adult world of coping with responsibilities and may be an integral part of an individual's competence. Medication appears to temporarily accelerate the sense of responsibility when the person is taking the medication, but when the medication wears off, old ways return. Taking medication does not slow the development of the sense of responsibility; but it doesn't speed it up too much either. It often helps the child to experience a higher degree of success, which makes work more rewarding. It is important to explicitly state to the child that having an attention deficit does not excuse an individual from the responsibility for action or inaction.
"Labeling" is an issue that can divide a panel of experts. Do you say a child has ADHD or describe a person who is inattentive, impulsive, and overactive? Do you use friendlier and more accurate words? The person is inconsistent and has inconsistent mental energy to bring to task. He often fails to process information deeply enough to consider all of its important points; he does not preview his actions; he fails to make transitions easily. How does the legislature deal with the myriad possible descriptors of children with attention problems without a label to put them under? How does an attorney demand that their needs be addressed? How do we stop the label from stereotyping a child.
The obvious answer is to incorporate the useful elements of each. We must keep insisting that descriptors accompany labels. Eventually, people will come to recognize that the descriptors are much more important and useful for individuals than the label. Some families are delighted to have a name for the nemesis that has plagued them; others find a name odious. Which is correct? Both.
Federal law prohibits discrimination against individuals with "disabilities." An individual with a significant attention deficit may be in this category. Schools, including universities, accept students with attention deficits and may have programs for students with special learning needs as well. No school that accepts federal funds may deny admission on this basis; in fact, admission of students with disabilities may be desirable to satisfy enrollment for special programs.
A Word about Disabilities, a Warning about Accommodations
The word disability conjures up feelings of hopelessness and sadness, of pity and sorrow, and "it just ain't so." It is also very disheartening and emotionally defeating to be labeled as unable to do something, and this may give a person a reason to stop trying. An age-appropriate explanation needs to be offered as to why he or she is having difficulty, and plans need to be mapped out with the child as to how to reach the desired goals in spite of these barriers. Do not allow the youngster to retreat into helplessness. A child may have extreme difficulty staying still in class, but that does not mean that he should be allowed to disrupt activities. A non-punitive approach focusing on goals, using reasonable accommodations and an appropriate balance of nurturing and accountability can be developed with extra effort that pays huge dividends. This is true whether medication is used or not.
Accommodations may be a legal right, but they must be reasonable if they are to be accepted by the teacher and other children. Accommodations do not work if they are generic; they must goal directed and tailored to the needs and strengths of a particular student. Explanation should be offered the child as to the reasons for the accommodations and the child should be taught to advocate for himself or herself. It may be appropriate to have the child pay a price for an accommodation so that he can say "I may not have to write as much as the other children, but I have an extra project. I don't have as many problems, but mine are harder." It helps save face and pride and supports the concept that fair is not necessarily equal.
As Dr. Mel Levine points out, childhood is a time of intense lack of privacy and little self-directedness. As children, we are expected (forced?) to be well rounded and good at everything. Some people just aren't. They may have some excellent edges, but if deficiencies are noted, they are harped on and the skills frequently ignored or forbidden as punishment to the student for his judged lack of trying. That treatment is disabling and cruel and wasteful. We need to spend far more time identifying strengths and helping the child to recognize and develop them. Strength recognition and development need to become a part of the mission statement of every family, school, and classroom in the country.
The child must clearly understand that his behavior is his responsibility and that attention difficulty or ADD is not an acceptable excuse for inappropriate behavior. He or she certainly needs the love and caring of the teacher and safety of belonging to the class, just like any child. He or she may also need some modifications of class routine to be able to learn or demonstrate what s/he has learned. Usual accommodations include shorter or longer time to complete task or test, preferential seating in class or individualized testing to minimize distraction, close visual monitoring, pre-arranged signals, allowing the child to move, visual signals to help with impulsivity, etc. He may need additional protection from predatory behavior of other students and occasionally by teachers. Protecting the child is an absolute and sacred responsibility of school administration-with no exceptions.
What are the side effects of stimulant medication?
It is always worrisome to write or speak about side effects because that focus may cause folks to feel that stimulants have such a host of problems that they should be avoided. In fact, stimulants tend to be gentle medications with occasional individuals experiencing side effects that are, usually, easily managed. They should not be used casually, but when appropriate should not be feared but approached with caution suitable to any medication.
It is both good and bad that the stimulants have a relatively short period of activity. They work fast, within thirty minutes, but don't last very long. The short acting medications usually last two to four hours, the longer acting ones may last four to fourteen hours. There is significant variability from one person to another, but an individual is usually consistent. From a side effect point of view, that means that if something undesirable happens, the medication can be stopped and it will wear off quickly. More often than not, if one medication causes trouble, a different stimulant medication may be well tolerated.
For discussion, the significant side effects will be grouped into personality or behavior changes, appetite and growth changes, somatic complaints, tic problems, and miscellaneous events. Although this list of side effects is not exhaustive, it is fairly broad in coverage. Most children take stimulants with benefit and no or minimal side effects.
What about personality effects?
The purpose of medication is not to change personality. It is not acceptable to have medication or other therapy remove the sparkle from a child's eye. Except in extremely rare circumstances, there should be no exception to this position. The child's activity may be less frantic than before and less impulsive, but neither parent nor child usually objects to these things.
Mediation is not to control the child. It is to enable the child to control himself. It may make the youngster more reflective before doing things and he may remember better what he is supposed to do, but he won't be much more enthusiastic about cleaning his room than before the medication. It does not make the child any smarter or any less smart, nor does it make him an angel. It should not take the mischief from his eyes but it should help him to decide when to act and when to ponder. It lets him consider options better, thus he has better control.
One possible mood side effect is a sort of generalized sadness, quietness, moodiness, or grouchiness. These may be seen alone or in combination. Sometimes these symptoms occur when the dose is too low or too high, but if the dosage adjustments do not result in prompt loss of these symptoms, the mediation must be stopped. A different medication should be considered under these circumstances.
Sometimes, a rebound phenomenon occurs, i.e., as the medication is wearing off, the symptoms are worse than before it was started. This behavior change occurs only when the medicine effect is wearing off. The proper treatment is to offer one half of the usual dose at that time and the rebound will stop. The "zombie" state that critics scream about occurs rarely and is due to too high a dose of the medication. It is quite disturbing to see, but this behavior goes away very quickly when the dosage is lowered. To avoid this, many practitioners start at a low dose of the medication and increase it every four to seven days until the desired effects are seen. If excessive quietness develops, lower the dose for a bit and try again after a week or so, or change the medication.
Many individuals who have attention deficits as a result of brain damage, significant developmental delay, genetic conditions, or a central nervous condition such as cerebral palsy are much easier to deal with, seem happier, and are more efficient learners when they take stimulant medication. Often, however, they are helped by very small doses of stimulants and are frequently "brittle" from day to day. Attention, impulse, and behavior problems in these children are often difficult to manage, requiring a combination of information, communication, compromise, negotiation, flexibility, creativity, and medication. Medication benefits are often significant. Very close communication among the team members (teachers, student, parents, physicians) is critical.
What about appetite and growth?
Stimulants were developed as appetite suppressants; and they do suppress appetite. To avoid this effect, we give the medication just before, during, or just after meals. When multiple doses are given, finding an appropriate window of opportunity to eat with good appetite may be challenging. This is especially true of children in higher grades who take an afternoon dose to do homework or children whose morning dose wears off before the class's usual lunch period.
A temporary slowing of growth may take place for a period of time after starting stimulant medication, but it returns to previous projected pattern. The most affected component of growth is weight gain and individuals who are heavy to begin with are most affected. It is rare, if ever, that a child's growth is permanently affected by stimulants. Strangely, growth may be temporarily slowed even in children whose appetite remains good. Even children who take stimulant medication only during school, using it less over weekends and summertime, often have a similar pattern of temporary weight-gain slowing, with marked exceptions in some individuals. Growth is one of the parameters that should be monitored by the child's physician every four to six months.
What about tics and Tourette's Syndrome?
A tic is an involuntary motor movement, such as eye twitching or a mild head jerk action. Some individuals have throat clearing or sniffing type noises as a tic; this is a "vocal tic." Quite a few people have tics which are mild, noticed by some friends, but not very impressive. Tics usually come and go, wax and wane and are usually worse when the individual is nervous or stressed. The type of tic may change over time and tics tend to go away when the individual is concentrating intensely. An in-dividual who has combined vocal and motor tics, which interfere with major life ac-tivities that last more than one year, has Tourette's syndrome, one of the tic disorders.
The optimal management of a child who develops tics in therapy is unsettled. Years ago, people thought that stimulants could cause Tourette's syndrome; we now know that is not the case. Half of the people with Tourette's syndrome have symp-toms of ADHD before they get any tics. If an individual is "scheduled" to get Tourette's, the medication may cause the symptoms to come somewhat earlier. As with simple tics, some specialists stop stimulant medication if an individual develops Tourette's syndrome, others consider the options and make a decision based on ben-efit and risk. Some specialists use higher than usual doses of stimulants to help control the tics of Tourette's.
Somatic Complaints and Miscellaneous Events
Some individuals develop stomachaches or headaches on stimulants. These symptoms generally appear early in the treatment period. They usually start one to two hours after the medication and last three to four hours. If the symptoms don't fit this pattern, they may be due to another cause. Usually giving the medication with food will get rid of stomachache as a problem. It is unusual to have to stop medication due to stomachaches.
Headaches may be different. The headache may be due to not eating, so this needs to be investigated. If headaches fit the above pattern and continue for more than two weeks or are intense, the medication needs to be stopped, then changed.
Difficulty falling asleep is frequently mentioned as a side effect of stimulants, but it is relatively unusual with mediation taken twice a day. Many people with attention deficits have difficulty falling asleep anyway. Some individuals with very active brains may take the medication to help them fall asleep, finding that it helps them to focus better and allows them to calm their brainstorms. If you try this, do so on a weekend, so that there will be an opportunity to catch up on sleep if it doesn't work.
Trouble sleeping can occur in individuals who take an afternoon or evening dose of the medication to study. The most difficult time to fall asleep seems to be at the time the medication is wearing off, typically, three to four hours after taking it. Considering that the after-school dose needs to be juggled to encourage the youngster's appetite with timing to allow easy sleep, common sense, creativity, and flexibility are all good to have.
Occasionally, other unwanted events can occur due to medication. This is true of any medication and almost any activity that a person may engage in. It seems healthy to consider any unusual events or behavior that begin after a medication has been started to be due to that medication. The mediation may be found innocent, but each unusual event needs to be considered.
Some of What We Think We Know about Children with Activity, Attention, and Impulse Control Problems
We know for sure that attention problems are not like being pregnant: you can have a little trouble with attention. A relatively small attention problem can become major in the wrong circumstances. Attention control is very situation dependent.
Attention deficits often run in families. Many, many times when I am discussing or asking about the kinds of difficulties that are heralds of attention problems, one spouse will keep looking at the other until one finally says "I'm just like that!" or "You have this!"
That is often a benefit to the child. One parent can readily identify with the child and the frustration and troubles that often come with attention problems. He also knows the good of it. The other parent obviously finds some of these traits attractive, or this child would never have been born. Families understanding of the youngster's behavior and recognition of this as a family pattern can give the child and family both comfort and solidarity. "If my daddy has this stuff and he has a job and got married and had kids and stuff, I can too."
It seems that we are dealing with a phenomenon that is a part of an individual's biologic package. We often see symptoms of poor regulation of sleep and appetite, unpredictable response to a lot of different stimuli in the infant history of many children who demonstrate symptoms of ADHD continuing as toddlers and school age issues. Brain research sometimes indicates displaced nerve bundles or voids where there should be nerve fibers in individuals with ADD and ADHD. There may be reverse or absence of normal asymmetry of the frontal lobes of the brains. Specialized radiology techniques have revealed differences in glucose utilization and differences in blood flow in attention areas of brains of individuals with attention deficits. Damage to the areas of the brain that relate to considering options or exercising appropriate judgment causes a loss of skills present before the injury. Scientists have identified a gene that disposes a person to be a "novelty seeker."
The big problem with much of the recent biologic research is that the techniques are not available as diagnostic tools. That means that there is, still, no reliable "objective" test for ADD. The diagnosis is made clinically after considering information from several sources, ideally, supported by the diagnostician's observations.
Many practitioners believe that ADD and ADHD symptoms are behavioral pathways for a variety of biologic and emotional situations. That would explain why research results are often complementary rather than absolutely reproducible. In other words, it makes sense that ADD and ADHD are not unitary conditions. The symptoms are common to many different conditions and, perhaps, situations. There are, almost certainly, "subtypes" of ADD and ADHD, conditions that are present simultaneously, and aggravating circumstances that change the appearance and influence of attention deficits.
Sometimes, behavior that appears to be due to ADHD and is followed over time is actually another condition, too early to recognize.
The Most Common Commonality
It is obvious to parents, teachers, family, and friends that sometimes the child tries desperately to control behavior, motion, or attention and is unsuccessful. At other times, the child seems to be easily in control, and other times, partially. This is enough to drive folks to despair. The inconsistency is maddening and always there is the judgmental side of each person that says, "I've seen him do it. Why can't he continue to do so?" "Why does he listen to his father better than his mother?" "How come he has so much trouble this year and last year was no problem at all?"
I'm not sure that we have the answers to all of these questions or all of the answers to any of them. Most investigators feel that inconsistency is an integral part of most attention deficits and relate it, in part, to an inconsistent supply of mental energy. Both personal reflection and recent research findings show that emotion exerts tremendous influence on the ability to think, learn, and act. Perhaps recalling that daddy is not as patient or vocal as mama and is more likely to do something unpleasant helps thought patterns in the heat of the moment. Some teachers or school subjects may gel with the child's affinities, others may clash. Thus we have reasonable explanations of some situations, many more are waiting their turn for explanation. But we have one consistency: inconsistency.
It appears, however, that the most common element of all children with attention deficits is the inability to consistently exercise the option to think about what they are supposed to be doing. It seems that these individuals do not get the option to consider the options. They are suddenly thinking about matters outside of class and not aware that they are doing so. They fail to remember to raise their hand because in the excitement of knowing the answer, there was not any thought about the rules of classroom behavior. Not much benefit to punishing; the child doesn't think about getting punished until someone points out that he has broken a rule. It's the lack of previewing that is the culprit. The child knows the rule; he forgets to check to see if there is a rule that applies.
In this context it is easy to see why children with attention deficits do not change behavior after punishment. What the child needs is a warning and reminder to keep the rules in mind. He needs to be gradually introduced to transitions. Peers need to be taught to appreciate his differences and difficulty waiting his turn and still protect their rites. That requires a lot of time, monitoring, good will, peer and parent understanding. Most teachers, peers, and children tire of the constant surveillance and intervention. It is not a lack of good will on anyone's part; people just get tired. Even when the child has a clear understanding of his strengths and areas of difficulty, it does not necessarily give him the control to deal with them unless he is in an ideal environment that follows him through school.
I guess my position is pretty clear. If a child has an attention deficit and is in trouble because of overactivity, impulsivity, and inattention, and reasonable attempts to help him deal with these tendencies at home and school have been unsuccessful, stimulant medication should be offered. Medication should not be the first and only step in dealing with these issues. Nonstandard therapies such as anti-oxidants, brain training, etc., have not stood the test of scientific scrutiny. Diet therapy is rarely successful and extremely difficult to implement. Exclusively, behavior modification therapy trains the child to cope with certain situations but is so labor intensive that it usually ends unhappily. Parents and teachers are already pushed by their lives and jobs. The amount of energy that they have available is limited. Medication is an option that should not be taken lightly, but, if needed, should not be avoided.
Dr. Ballanco is a member of the CDL Board of Trustees.