Discontinuing ADHD Meds
Sometimes the only way to move forward… is to stop.
MUCH HAS BEEN WRITTEN about starting medication for ADHD. Carefully controlled treatment trials are crucial in determining who will benefit, what medicine works best, and at what dose. But much less attention has been paid to stopping ADHD treatment.
At the beginning of treatment for ADHD, parents often wonder, “If this stuff works, how long will my child have to take it? Children might wonder, too. If your child has been taking ADHD medicine for a while, how do you tell if it’s still working? Also, if your child has irritability, anxiety, social withdrawal, poor eating, insomnia, tics, or obsessive-compulsive behaviors, how do you tell if these symptoms are a side effect of ADHD medication or coincidental, a coexisting condition?
Sometimes, the best way to see if medication is (1) still needed, (2) still working, or (3) causing a side effect, is to do a controlled discontinuation trial. Here’s how.
Accidental discontinuation trials
Unintentionally, people do discontinuation trials all the time. A dose is forgotten. A capsule is found between the sofa cushions. A bottle isn’t packed. A prescription isn’t refilled. The family dog suddenly stops chasing squirrels! (Just kidding.)
Sometimes, accidental discontinuation trials yield clear results. For example, a teacher calls a parent and asks, “Did Timmy get his medicine this morning? He’s bouncing off the walls!” But what if your child has a few good days off meds? Before throwing the meds in the trash, remember, ADHD is all about performance inconsistency, not absolute inability. Most children with ADHD can do well off medication for limited periods of time–especially if the ADHD is relatively mild, the setting is structured, and the expectations are familiar. The need for medication may eventually resurface only when self-control is required over longer periods of time, across a wider range of settings and tasks.
Also remember, ADHD changes. Over the years, predominant hyperactivity and impulsivity symptoms often transform into more subtle distractibility and executive dysfunction. Children learn compensatory skills. Just because discontinuation caused more obvious symptoms in the past does not mean that your child has completely outgrown the disorder. The important decision to stop medication should be made carefully, after data is collected in a more deliberate and reliable manner.
Controlled discontinuation trials
Controlled discontinuation trials are really just treatment initiation trials in reverse. First, identify reliable observers; usually parents, a teacher, and of course your child. Then, using standard rating scales, have all observers rate target symptoms and possible side effects, at baseline on the current dose of medication.
Stimulant medication does not have to be tapered. You can just stop. Nonstimulants should be tapered gradually to avoid rebound side effects. Each week during the discontinuation trial, all observers should share their follow-up ratings with the prescriber. Every step of the way, parents and prescribers should make these important decisions together.
Interpreting and acting upon results
A discontinuation trial to see if medication is still needed or still working yields one of four possible results:
• Complete relapse is when ADHD symptoms were well controlled on medication but come back off medication, again causing a significant degree of impairment. Here, just start it back up and retake the ground lost.
• Partial relapse is when ADHD symptoms were well controlled on medication and come back off medication but cause less impairment than before treatment. Here, you might decide to just restart the medication. Or, if uncertain, you might continue to observe to see if this degree of relapse causes significant impairment over a longer period of time.
• Partial treatment is when ADHD symptoms were not under optimal control on medication but discontinuation causes symptoms to get worse. In retrospect, the medication wasn’t perfect but it was still substantially better than nothing. Here, if there were no side effects, you and your prescriber should consider increasing the dose.
• Possible remission is when ADHD symptoms were well-controlled on medication but do not come back off medication. At least, there is no immediate impairment. At best, more prolonged discontinuation proves true remission. If there is delayed relapse, consider restarting. If not, stay off.
A discontinuation trial to see if medication is causing a side effect could yield one of four possible results:
• Completely reversible side effect. If discontinuation results in complete disappearance of the symptom in question, then it was probably a side effect secondary to the ADHD medication. Here, your child should stay off the medication and try something else. However, if the medication was otherwise working well, your prescriber might try lowering the dose to see if you can lose the side effect but keep the benefits.
• Partially reversible side effect. If discontinuation lessens but does not eliminate a suspicious symptom, then it is probably a coexisting condition; in part amplified—but not entirely caused—by medication. The dose of the ADHD medication could be lowered, a different ADHD medication could be tried, or (if severe enough) the coexisting condition could be treated.
• Coincidental symptom not affected by medication. If discontinuation has no impact at all, it was probably a totally coincidental problem. Again, treatment depends upon severity.
• Coincidental symptom partially treated by medication. This is often a category of surprises. Sometimes discontinuation makes a presumed side effect worse instead of better. For example, on medication, many children with ADHD actually have less trouble with eating, sleeping, and mood, especially if these problems were partially driven by hyperactivity, impulsivity, or distractibility. Here, resume the ADHD medication, knowing that it is not causing the problem; rather, making it better.
Combined therapy to lessen side effects:
Even after meticulous experimentation with different medications and different doses, you still might not be able to find one medication that provides adequate ADHD treatment without side effects. In that case, you and your prescriber might consider trying a combination. Give the maximum tolerated dose of the most effective stimulant with the maximum tolerated dose of the most effective nonstimulant. Neither of these medications by itself would work well enough. But each medication might augment the effectiveness of the other without additive side effects. In other words, a little of this and a little of that might avoid side effects and work better than a larger dose of one or the other.
Uncertainty and do-overs
Whether you are running a discontinuation trial to assess effectiveness or unwanted side effects, it is not unusual to get “fuzzy” results. In real life, it’s almost impossible to control all the variables. Medication discontinuation is never the one and only change. Other relevant factors—obvious or hidden—are always at play. To resolve uncertainty, simply claim a do-over. Run a “double-challenge” or “ABAB”—design experiment. This means: A) stop the medication, B) restart, A) stop again, and B) restart again. With the help of multiple observers and an appropriate observation interval, see if symptoms come and go.
Toward a better life for your child
Hoping to outgrow or minimize the need for medication is perfectly understandable. However, failure to get off meds does not mean failure to overcome ADHD. Needing to take higher doses does not mean things are getting worse. And most side effects can be successfully managed. The overarching goal in treating ADHD is not to get off meds or reduce the dose but to relieve impairment and improve quality of life. Whatever it takes.
Timothy Wilens, MD, and Paul Hammerness, MD, Straight Talk About Psychiatric Medications for Kids, Fourth Edition (Guilford Press, 2016).
Russell Barkley, PhD, Taking Charge of ADHD, Third Edition: The Complete, Authoritative Guide for Parents (Guilford Press, 2013).