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Medication for Kids: Neither Curse nor Cure

To medicate, or not to medicate?

Medication for Kids: Neither Curse nor Cure Theodore: In the beginning, I thought medicine was going to fix everything. It didn't. Then for a while I didn't appreciate the medicine, but when my parents told me about the effects that they and my teachers were seeing in me, I changed my thoughts about it. Now I don't mind taking it. Even though it won't fix all my problems, it does help them.

Sharon: More than one parent (and too many educators) think stimulant medications are magic bullets that will radically change a challenging child like Theodore into a responsive, compliant, focused, accommodating individual who is happy and has great self-esteem.

Many parents are averse to medicating challenging children. Because there is no blood test for emotional distress or X ray that shows an imbalance in brain chemistry that may be affecting their child, they are unsure if medication is really needed. These same parents do not hesitate to use medication to treat bacterial infections or insulin to treat type 1 diabetes, but they do--and should--have serious reservations about giving their child medication for a condition that is not easily quantified. However, you cannot allow media hype, your own emotions, and pressure from well-meaning but ill-informed family members and educators to make the decision for you.

Medication is generally suggested for two reasons. The first is for short-term use to help a child get through a traumatic situation, such as depression because of a death in the family. In these cases, the child has no underlying chemical imbalance and stops taking the medication when he has recovered. More relevant for parents of challenging children, however, is that medication is often recommended when someone, hopefully someone who's knowledgeable in the field, thinks there is an imbalance in the child's brain chemistry. Some disorders like ADHD or obsessive-compulsive disorder are rooted in the brain's chemistry. In these instances medication is used to reestablish a delicate chemical balance, thus enabling the child to function better in daily life.

Naturally, parents want to ensure that medication is warranted. Responsible professionals feel the same way. They gather a great deal of information before writing a prescription for medication that affects behavior or emotions. Some challenging children, however, are not good candidates for medication. For example, medication cannot correct or even improve most learning disabilities. In other cases, the condition itself does not respond to medication.

The issue of appropriate use of medications is extremely complex. This book should not be considered a primary resource on types or dosages of medication. Nor do we mean to provide a detailed analysis of medication options for different problems, or medication side effects. Other books, such as Straight Talk about Psychiatric Medications for Kids by Timothy E. Wilens, M.D., better address the finer points of psychopharmacology.

Instead, we focus on issues that arise any time such medications are being considered, hassles parents encounter, and problems kids experience. We include recommendations for making the process more productive and less onerous. We focus on Jan and Jamie's decision to use medication therapy, Theodore's feelings about medication, and his opinion of the results.

This last point deserves special mention. As emotional as this topic may be for you, the parent, think how difficult it is for your child. A very young child will generally accept what you and the doctor say. Eventually, however, many will challenge it. "Why do I have to take this stuff?" "I'm tired of taking these pills." "None of my friends has to take medicine every day." By the time he is older, the social stigma and the need to be "normal" can significantly affect a child's feelings about taking medication. In addition, you may be making the process more difficult for him by telegraphing your own concerns.

Be proactive rather than reactive. The prescribing physician can tell you what concerns your child may have about medication and suggest ways to handle them. Talk to other parents whose children are on medication. Find out if other children your child's age (or a little older) are available to talk with your child. Teens will listen to their peers long before they will listen to you. A peer "medication mentor" can be ideal for an adolescent. Education is the key--both for you and for your child. There are excellent books written for children that also make wonderful resources for you. Those listed in the Resources section include several that may be helpful. Reading these before medication treatment starts will better enable you to predict and respond to your child's concerns.

Quick Tip
A peer "medication mentor" can help your child, particularly in adolescence, handle the inevitable concerns that arise about medication.

Beginning to medicateAny decision to introduce medication into a child's system is a serious one and should not be made lightly. Whatever the decision, it should be an informed one, not just an emotional one. Because there is so much information and misinformation, it is especially important that parents do their homework and not rely on word-of-mouth, possibly uninformed opinions. Jan and Jamie were touched by the emotionality and aware of the hype, but they also did their homework. This better prepared them for the roller coaster ride of helping to manage Theodore's medication treatment.

Initial Reaction: "Oh, No! You're Not Going to Drug My Kid!"
Jan: My reaction when Theodore's third grade teacher suggested that he might have attention deficit disorder was the thought, Oh, no. Not Ritalin! Ritalin and ADHD were inextricably linked in my mind and it wasn't favorably. I'm not opposed to medications per se. Giving hyperactive kids stimulant medication just made little sense. How could stimulant drugs calm down a hyperactive kid? Or make him less distractible? Or less impulsive? I wasn't comfortable with "drugging" an eight-year-old, though I had no problems with the drugs his sister, Caroline, took to prevent sinus infections. Somehow Ritalin was different.

The more I read, the more I understood how stimulant medications (used for ADHD) worked. Since ADHD is a problem of congenital understimulation of parts of the brain that regulate attention, impulsivity, and activity, then medications that stimulate those parts of the brain to work more effectively made sense to me. The more I understood about the potential benefits, the more open I became to the idea of medication for Theodore.

Getting Going: From the Doctor's Office to Theodore's Mouth
We found a pediatrician with a developmental background and an exceptional understanding of ADHD. Between the extensive questionnaire his office sent us to complete and the testing information we provided, the doctor had a lot of information about Theodore before he even saw him. We all liked him immediately. He felt confident that Theodore was a good candidate for medication and would likely benefit from it. He said that we should start seeing the effects almost immediately--within a day or two, although he cautioned that it would take some time to determine the optimal dose.

He started Theodore on Ritalin (its generic name is methylphenidate), which is short acting--lasting roughly three to five hours, though four hours is the average. He recommended we follow his usual practice, which was to begin with the lowest dose possible, seven days a week, and add to it until everyone felt it was effective. He told us that Ritalin's effect on Theodore was more likely to be seen first at school. Initially, he timed the doses to get Theodore through the school day, suggesting he not take it too late in the day to avoid sleep disturbances. We discovered that Theodore didn't fit the norm and we soon added a small, early-evening dose.

Theodore started on five milligrams of Ritalin three times a day--at breakfast, at lunch, and at 4:00 P.M. We hoped the Ritalin would last through the after-school program and help him get homework done. We agreed it was important to keep Theodore on this schedule on weekends as well as school days. If he needed Ritalin to focus his attention, to reduce distractibility and impulsivity at school, he needed it at home and in social situations too. More important, Theodore's desire to do better at home and with friends reinforced the doctor's recommendation of weekend medication. We also felt it was important, as did the doctor, to keep him on medication during the summer.

Medication Realities and School Policy Collide
Not surprisingly, having Theodore take medication at school entailed numerous problems. Because they are subject to abuse, stimulant medications like Ritalin, Adderall, or Dexedrine are classified as controlled substances. This means that there are additional controls on their prescription and use. Physicians cannot call a prescription in to the pharmacy and may not authorize refills. They must write a new prescription every time and cannot fax the original to a pharmacy. If your doctor is willing, he can save you time by mailing the prescription directly to the pharmacy.

School systems have rigid rules for dispensing such medications, which add another layer of inconvenience. Theodore's school required a signed form from the doctor, which could be faxed to the school nurse, authorizing the school to give Theodore the medication. Other safeguards included use of original prescription bottles and new forms and new bottles when dosages changed. The process was time-consuming and frustrating.

Taking medication at schoolIt was especially onerous whenever Theodore's medication or dosage changed. Since his medication was altered only because the existing dose or medication wasn't effective, quick action was necessary. All the rules, however, meant that he suffered unduly when a simple change took so long. I learned to keep the pediatrician supplied with extra school forms and stamped, addressed envelopes so we could change doses with the least hassle.

Quick Tip
For a child on stimulant medication, supply the doctor with self-addressed, stamped envelopes and school medication-authorization forms to speed up the process for medication refills or changes. You may save time if the doctor is willing to mail the prescription directly to the pharmacy.

Finally, before Theodore started on the medication, we met with his teachers and school nurse so they would know what to expect. In addition, we set up a system for regular communication with his teachers (weekly telephone calls, supplemented by occasional notes and brief face-to-face meetings) for the first few weeks to help get Theodore's dosage right.

Although we didn't have a written checklist for Theodore, we had a mental one that we covered in each conversation. Was Theodore interacting more appropriately with his peers? Was he less emotionally volatile in class? Did he seem less easily frustrated? Was he able to concentrate for longer periods of time on his schoolwork--especially when it was of little interest to him? Was he interrupting less often? Was he less easily distracted? Was he better able to contribute to group discussions without blurting out or interrupting? Did he seem less restless? Most important, was the quality of his academic work improving?

Quick Tip
Provide the teacher with a written checklist of behaviors that can indicate whether the medication is working. This is especially helpful when starting medication or after dosage or medication changes.

Wow! It Works!
Inconveniences aside, the Ritalin worked. We saw changes in Theodore almost immediately. He seemed less "wired" the first or second day. His teachers reported that he was far more focused, less distractible, and not as emotional or sensitive to slights. After only one month, the change was like night and day: his academic performance soared. Although his speech remained rapid (as in faster than a speeding bullet), he could share more of his thoughts with his classmates. He interrupted less often, withdrew less often into books, and participated better in groups. At home, though homework was still no picnic, he did it with fewer distractions. He was calmer and a little more focused.

Initially, we scheduled his after-school dose at 4:00 P.M. so the doses would be evenly spaced throughout the day. However, Theodore's after-school program was not vigilant in ensuring he got his medication and, not surprisingly, he didn't often remember on his own. We realized he didn't like to take medication at school because it made him feel stigmatized--"different." Eventually we developed a routine for Theodore to go to the nurse for his last dose when school was over on his way to the after-school program.

Theodore: I thought there was something wrong with me because I never fit in with other kids. I felt even worse when I learned that I had ADHD. When I found out I had a brain problem I felt like some kind of an outcast. I thought that nobody else had ADHD and nobody else took Ritalin.

At first I never liked to take my medication because I had to raise my hand, wait for the teacher to call on me, and then ask in front of everybody if I could go and get my medicine. I didn't like that. Other kids knew I took medicine, even though I didn't have asthma or strep throat or something. I felt like they thought I had some weird physical or mental problem. When I started taking my medicine on the way to lunch and right after school, I felt better because I could casually walk away from the group and go get it.

When I first started taking medication, I was afraid other kids would make fun of me, but they never did. Now I don't feel so bad about it. No one notices. Besides, I've found out a lot of other kids take medication for ADHD too. Plus, I know that it helps me pay attention and stay focused in school.

Realistic expectationsReasonable Expectations for What Medication Can Do
Sharon: Medication is often an essential component in the treatment of some disorders. Schizophrenia, for example, can't be effectively treated without medication. Though the media would have you believe that treatment with stimulant medication is controversial, it is, in fact, carefully studied and its benefits well documented by the research. It can make an enormous difference in the ability of a child with ADHD to focus and reduce impulsive behaviors. Other types of medication can even modify the more extreme behaviors associated with disorders such as bipolar or anxiety disorder.

However, medication cannot enable a child to demonstrate behaviors or skills he does not have. Medication may lift a depressed child's black moods but it won't necessarily enable him to make friends--the lack of which may have contributed to the depression. Similarly, if a child's behavior is a function of poor impulse control or inability to focus, then stimulant medication may be beneficial. However, if a child's mechanism for expressing anger is to deck someone, the only change stimulants may produce is that he will check to see if anyone's looking before he decks someone. Stimulant medication will not teach a child a better way to express anger. It may only give him the impulse control to delay his instinctive response. Medication alone is unlikely to be the magic bullet or, more to the point, the magic pill.

Medicating doesn't mean you're taking the easy way out. Your child's need for medication does not signify failure as a parent. Ideally, it means you've made an informed decision and understand what medications can and cannot do. A dogmatic stance in either camp--opposition to or insistence on medication--will not serve your child well.

Sometimes medication may be what your child needs. For some children, it enables them to better benefit from other treatments. It may make a child more receptive to learning new ways of doing things. An older child or adolescent may be more cooperative in group or individual counseling. It may reduce impulsivity so that a child with ADHD can benefit from social-skills training.

Discussions of medication tend to focus on fears and cures, both of which are exaggerated. Your first obligation is to educate yourself. Ask questions about why your child needs this. Ask what the medication is supposed to accomplish. Ask what you can expect as signs the medication is working. Ask how long it will take to see these signs. Ask about side effects. Your child's use of medication requires vigilant monitoring. As emotional as the topic may be, education and vigilance can reduce the stress.

Medication Doesn't Fix Everything
Jan: It took a long time--probably three months--to get Theodore's Ritalin dose to a fully effective level. Close monitoring, by us at home and by Theodore's teachers, helped determine when he reached an optimal dosage.

It took even longer to figure out what the Ritalin could and couldn't do. Ritalin allowed Theodore to control himself better. It allowed him to concentrate better in class and follow the routines we were trying to establish at home. It didn't, however, enable him to make friends, slow down his speech, or suddenly give him the maturity and capabilities of an older child. He still forgot things, lost stuff, and got distracted, although less than previously.

Although we hoped that Ritalin would help Theodore become more organized, the biggest changes at home were achieved when we restructured household routines. That enabled us to appreciate the improvement in Theodore's ability to get through his chores and homework--which was due to the Ritalin.

Adjusting the time of his morning dose also made a difference. By giving half of the dose when we woke him up, he was better able to get through his morning routine. Getting the rest just before he left home helped get him through the school morning.

Theodore: When I started taking medication, I really didn't feel any different. Medication didn't make me feel weird or strange. But it also didn't make me feel calmer or better able to focus. On the other hand, I can tell when I need to take it because I get fidgety, restless, and pumped up. It's hard to describe. Once I've taken my medication, I don't feel "changed," but I'm able to perform better physically and mentally. Even though other people told me my behavior was changing, I didn't see it. In looking back, I realize that my parents were yelling at me less, but I didn't notice at the time.

Jan: Theodore's doctor warned us that since most kids feel normal and cannot tell when the medication is working, we should not rely on Theodore's report as to how well it was working or whether it was helping him. Usually the first thing they can tell is how they are when they forget a dose or when it wears off. They might say things such as "I get the squirmies around one thirty" or "I start getting loud again."

Medication was supposed to make Theodore less impulsive. It did, to a point. But the chief manifestations of his impulsivity were extreme talkativeness and a tendency to act before thinking in dealing with his peers. Unfortunately, the medication really didn't affect these traits.

Is it working?Learning to Recognize When Medication Isn't Working
For a long time, I clung to the belief that the medication would work every day, every dose, without fail, and that was mostly the case. Occasionally, Theodore would get up on the wrong side of the brain (biochemically) and the medication just wouldn't work. Or, one dose out of his daily three or four didn't work. While Theodore was never hyperactive, he was indeed restless. One of the first indicators that his Ritalin dosage wasn't working was that he seemed "wired." I had to accept that occasionally--rarely, actually--Theodore's medication just didn't work. Even then, it usually only affected a single dose.

Monitoring Medication's Effects on Your Child
Sharon: Whether the medication is for depression, anxiety, ADHD, or anything else, one of your responsibilities as a parent is to monitor the effect it has on your child. Including your child in the assessment and monitoring process reinforces this as a team effort, not something done to "fix" him. Moreover, it may increase his awareness of the benefits of medication so he is better able to judge its effectiveness himself.

Here is a list of questions you should ask when your child begins medication therapy, changes dosage, or starts taking a different medication.

• Is the medication having a positive impact on your child's mood and/or behavior?
• Do you think the dosage or medication is working?
• Does your child think the dosage or medication is working?
• Does the dose need to be increased or decreased?
• What was the change in a specific behavior or set of behaviors that caused you to conclude that the medication needed to be evaluated?
• Is your child experiencing any side effects (e.g., headaches, stomachaches, fatigue or sleeplessness, dry mouth, etc.)?
• What is the likelihood those side effects will last? (Ask your doctor.)
• Do any lasting side effects (if any) outweigh the medication's benefits?
• Do you or your child think a medication or dosage level has stopped working?

You need to sort out whether the positive and negative changes you see are a function of the medication. To do so, you need a clear understanding of what behaviors and/or moods to monitor to help decide whether a medication is working. Sometimes it's a matter of what to look for in assessing changes the medication produced. It's also important to know which behaviors might change.

To start, get a baseline or measure of one or more behaviors before treatment begins. You're looking for improvement but improvement in what? A child's behavior may be different in various situations. If you and your child's teachers complete a behavior rating scale or symptom checklist before starting medication, and repeat the process at intervals throughout treatment, it can provide a more objective measure of change at home and at school. Be specific. Tailor a checklist for behaviors that are relevant measures for your child. (See Sample Behavior/Symptom Checklist.)

Be vigilantChecklist data, combined with your general impressions, will help your doctor make necessary medication changes. The goal is to determine what produced the improvement (or deterioration) in your child's behavior. Is the change really the result of the medication? Are you attributing too much of any change in attitude or behavior to the medication? What else could be responsible?

You also have to consider typical changes in temperament most children experience. You have to recognize that the onset of an adolescent "attitude" may be just that, and not a medication issue. Where once you had a questioning child, now you have a balking adolescent. Does that mean the medication isn't working anymore? The key is whether the medication is doing what it is supposed to do, not what you, the parent, thought or wanted it do. The latter is wish fulfillment and not a valid measure of a medication's impact.

Necessity for Vigilant Monitoring
Jan: If Theodore's medication wasn't working on more than just an occasional basis the signs were subtle, and they often appeared at school before we saw them at home. We gradually learned to distinguish between when an occasional dosage or the medication itself was no longer working for Theodore.

Ritalin worked for nearly two years. However, in fifth grade, Ritalin stopped working almost entirely. Theodore's grades began to slip. Though projects were never his long suit, Theodore was particularly unable to stay focused, plan, or do anything without exceedingly close supervision on a big project. It was as difficult as it had been before his diagnosis. By the end of a weekend of yelling and screaming, we began to wonder if the Ritalin simply wasn't working anymore. His teacher reported that he was constantly interrupting, bothering his neighbors, and having a hard time sitting still.

It wasn't clear that we could just increase the Ritalin dosage as in the past, because it was now nearly at the maximum level. We could try one last increase, which probably wouldn't work, or switch him to a different medication. Adderall usually lasts longer than Ritalin (generally 5½ to 6½ hours) and might last him throughout the school day as it does for some children. However, we didn't know how long it might take to find the most effective dose. We reluctantly opted for one more Ritalin increase, but rapidly concluded that it no longer worked. So, with some trepidation but no real choice, we switched him to Adderall. To our--and Theodore's--relief, it worked immediately. However, since Theodore metabolizes medication quickly, we weren't surprised that he needed a lunch dose.

This lengthy process meant that Theodore had been undermedicated for too long. If we had been keeping a medication log or a data sheet that recorded specific behavioral changes at home and at school (see Sample Medication Log), we might have shortened the time it took to adjust Theodore's medication. Knowing what to look for would have helped us spot changes far more quickly.

Steps for Monitoring Medications

1. Keep a written record or log of all medications (including dosage changes) prescribed for your child (see Sample Medication Log). Record impressions by you, teachers, Scout leaders, grandparents, and anyone else he regularly sees of the effect the medication has on him.
2. Write down anything the doctor says about potential side effects and changes you can expect to see in your child because of the medication. Don't rely on your memory.
3. Share that information with your child's teacher and other interested adults because signs of medication (in)effectiveness may not show pup first at home.
4. Establish a schedule for regular communication with your child's teacher and other interested adults. Adhere to it.
5. Use a simple written checklist of behaviors to monitor (see Sample Symptom Checklist). This is helpful for you and for teachers. It provides a consistent measure of change (if any) and assures that everyone is looking at the same things.
6. Consult your child's doctor if you see behavior changes that suggest the medication may not be working.