More Than Refills
Attention Magazine October 2019
DESPITE LIFE’S COMPLEXITIES, regular ADHD follow-up visits are very important. I recommend scheduling a visit with your ADHD doctor at least once every season; fall, winter, spring, and summer. If your prescriber is your pediatrician, then one of these quarterly visits could be incorporated into the yearly well-child care visit. If your prescriber is a child psychiatrist, child neurologist, or developmental-behavioral pediatrician, then you should schedule these ADHD visits in addition to general pediatric check-ups with your primary care provider. Of course, if special problems arise, the frequency of visits should increase.
Routine maintenance visits are necessary for the following reasons:
- Monitoring for undertreatment of ADHD
- Active surveillance for side effects
- Monitoring for associated conditions
- Anticipatory guidance about upcoming developmental hurdles
- Gradually shifting responsibility for care from parent to growing child
With those goals in mind, each ADHD follow-up visit should include the following:
- Discussion of parent and child concerns. You and your child might want to prepare a list of questions before the visit.
- Review of feedback from teachers and other professionals. Feedback questionnaires, distributed and completed in advance of the visit, can be very helpful. Secure email is a great way to efficiently share information between members of the care team. It is always helpful if the prescriber can schedule a brief teacher or school team conference call before or after the child’s follow-up visit.
- Review of medication effectiveness and side effects. Before the visit, you and your child can also complete rating scales. At the visit, you can combine your observations with those of teachers and other professionals. And of course, discuss it all with your prescriber.
- Measurement of weight, height, and body mass index (BMI) should be plotted on a growth chart and compared against previous points. In addition, the blood pressure and pulse should be checked at each visit.
- Screen for coexisting issues. This means systematic review of physical and mental health, academic performance, extracurricular activities, behavioral issues, peer relations, home life, and environmental stresses.
- Highlight successes and nurture relative strengths. This means asking about the child’s accomplishments, efforts, and interests.
- Keep building the doctor-patient relationship. At the beginning and end of the visit, the doctor should take a few minutes to play with the child, or otherwise reinforce rapport and trust.
Monitoring for undertreatment of ADHD
“Everything’s fine. No problems. Just need a refill and we’ll be on our way.” All too often, this is the report from parents, teachers and children. But everything is not fine. Some issues are revealed only on closer inspection.
Without active surveillance, undertreatment falls through the cracks. The right questions need to be asked. With deeper and more detailed assessment, it often becomes clear that ADHD symptoms are not under sufficient control. Undertreatment causes important problems at school, at home, or with friends. Sometimes, medication that was working well seems to lose effectiveness. This can be because of growth, coexisting conditions, or changing life circumstances.
Make sure to talk about the adequacy of treatment across different times, tasks, and people. Remember to distinguish coverage during medication peaks from troughs. Is there inadequate treatment even when medication is fully on board, only when medication levels are low, or during both peaks and troughs? Is medication coverage adequate for some tasks and settings but not for others? Read more on this topic in my article in the Fall 2017 issue of Attention (https://chadd.org/attention-article/peaks-and-troughs-uneven-medication-coverage-adhd).
Active surveillance for side effects
Some side effects are revealed only in the context of the follow-up visit.
There may be subtle but significant decelerations in weight gain from stimulants. Often, parents and children come to ADHD visits certain that the weight gain has been “just fine” and are surprised to learn otherwise. Or they might have serious concerns about appetite suppression and poor growth, then stare in disbelief when the numbers prove reassuring. This discrepancy between assumption and measurement never ceases to amaze me. But the scale and the growth chart never lie.
Occasionally, there may be low blood pressure from alpha agonist medication, such as guanfacine or clonidine. Very rarely, there may be high blood pressure or fast heart rate from stimulants. Sometimes, doctors pick up on medication-induced tics that parents and children might not have noticed or assumed were caused by something else. For example, many people mistake cough tics or eye-blinking for allergies.
The follow-up visit often gives parents and children the opportunity to step outside of their busy lives and think about other possible side effects that might be otherwise overlooked. The impact of changes in mood, anxiety, or sleep problems might be minimized. The connection between medication and many such symptoms may be missed altogether. It’s not that side effects from ADHD medicines are totally hidden. Special laboratory tests are not necessary. However, unless parents, teachers and children are asked very specific questions, possible side effects may go unreported and undermanaged. Sometimes, it’s not clear whether a symptom is secondary to medication or just coincidental. In these cases, as discussed in my February 2018 Attention article (https://chadd.org/attention-article/discontinuing-adhd-meds-when-the-only-way-to-move-forward-is-to-stop), discontinuation trials may be necessary.
Monitoring for associated conditions
ADHD follow-up visits give prescribers the opportunity to screen for commonly associated conditions. Some problems may be secondary to ADHD. Others might be coexisting.
Over the years, new developmental phases and increasing expectations bring out new issues and new concerns. Some issues might be obvious. For example, the follow-up visit allows the prescriber to cover ordinary issues, such as sleep, eating, academics, and friendships. Other very important issues might be hidden. Prescribers should create a safe place to ask about anxiety, depression, teasing, bullying, abuse, sexuality, gender identity, and substance use.
An old medical school adage applies: “If you don’t look, you don’t find.”
Children and adolescents with ADHD should receive the same kind of anticipatory guidance as anyone else. They just need more of it. This is because ADHD usually makes everything more complicated and challenging. As a supplement to primary medical care, regular medication follow-up visits provide extra opportunities to discuss a whole range of important developmental issues. At each visit, there is never a shortage of topics to cover. To name a few:
- growth and nutrition
- family relations
- screen and social media use
- drug, tobacco, and alcohol use
- driving and other safety issues
- social success and stress
- conflict resolution
- puberty and sexuality
- academic success
- life after high school
Coaching should be customized to meet each child’s needs.
Gradually shifting responsibility for care from parent to growing child
Although parents are key to successful care, the child or adolescent is the patient. The ADHD follow-up visit should include strengthening the doctor-patient relationship and teaching self-advocacy.
From the very first visit, children should be made to feel that they are crucial participants in their own care. This begins with education. The child should be taught about the nature of ADHD and how medication works. They should practice monitoring target symptoms and possible side effects. They should be made to feel that their voice is heard.
ADHD follow-up visits should always include discussion about safe strategies for self-management of medication. Early on, taking medication should be considered a shared responsibility between parent and child. This means parent-supervised practice using schedules, reminder systems and pill boxes. Adolescents should be taught how to use their own tracking devices and manage their own refills. Before going off to college or entering the workforce, they should learn about medication abuse for performance enhancement and illegal sale for profit. At every visit, at every age, there’s always a lot to discuss.
Beyond medication management, these visits represent wonderful opportunities for your child to learn more about developmental difference, self-awareness, and self-regulation. Over the years, doctor-patient discussions become broader, deeper, and more nuanced. Gradually, a greater percentage of the visit should be spent without the parent in the room. Doctor and patient should discuss the complexities of disability. Children and adolescents can be taught to objectively evaluate their own treatment resistance, denial, ambivalence, and self-acceptance. They can learn that ADHD is an explanation but not an excuse, a hurdle but not a roadblock. Adolescents may struggle to resolve normal developmental conflicts pertaining to interdependence and self-responsibility. It helps to have a sounding board.
A strong doctor-patient relationship translates into improved ability to seek help and a greater degree of self-reliance. ADHD visits can teach children how to access the healthcare system and form a trusting relationship with their doctor. Moreover, the child should come to see their doctor as a caring ally, a steady presence in both times of trouble and times of triumph. During the last few years of high school, the follow-up visits should focus more on a smooth and gradual transfer of care from the pediatric provider to an adult provider. One hopes that these regular visits not only ensure good care but also forged relationships that are valued and remembered fondly by the emerging adult and the aging doctor alike.