Part 1 of 2
Few things are more frustrating and heartbreaking for a parent than having a child who struggles with anxiety, behavior, mood issues, or learning, doing everything they’re told to do to help that child and then watching them continue to struggle or get worse over time. Most parents want what is best for their children and will do whatever they can to help them be happy, healthy, and successful.
Parents of children with challenges can quickly find themselves and their child on a twisted path of evaluations, treatment recommendations, and medications that seems to lead nowhere close to the destination they and their child desire – for the child to feel and function well. They are typically not given thorough information about potential root causes of their child’s challenges, all available options to address them, or what they should do before looking at medications for their child. So, parents do what they are told will be helpful – they fill the prescriptions and expect that their child will improve.
But rarely is that the end of the story. For many, it is the beginning of a rollercoaster ride that neither parents nor child agreed to take. Psychiatric medications often do not lead to sustained improvement for children and can cause many adverse side effects that bring with them a host of new problems. Even when they do support symptom reduction, these drugs do not resolve the root causes of a child’s challenges and can lead to short and long-term health concerns. Yet they are widely used for symptoms and conditions that research has shown benefit from other approaches without the short and long-term safety concerns associated with these drugs.
Parents and Children Have Questions
What happens when a parent has gone down the medication path with their child, but now desires to take another approach? Or when a child decides they no longer want to use psychiatric drugs to address the behaviors or feelings for which they were prescribed? How can parents help their child safely withdraw from these medications? What treatments and supports may be needed to get through this process, and to address the problems without medications?
These are all questions that I’ve been asked many times over the last two decades of working with children, parents, and families. They are important questions, but ones for which parents often struggle to find answers due to a lack of information from their providers or mainstream sources of information on mental health diagnoses and treatment. The general refrain is that children with mental health diagnoses require some form of counseling therapy and/or psychiatric medication to address their symptoms, and that they will require these medications forever.
For parents and children who desire a non-medication approach to treatment, or who are taking medication and find that it is ineffective or makes things worse, it can be a lonely journey to find supportive practitioners and answers to their questions. It is my hope that what follows in this two-part essay will serve as a guidebook of sorts to help parents on the journey of advocating for their child and preferences, and to explore the process of reducing or fully withdrawing their child from medication. If nothing else, perhaps the information and stories will give parents hope that this is possible, and to know that they are not alone.
How Common Is Psychiatric Drug Treatment for Children?
Psychiatric drugs have become a mainstay of treatment for children and teens with mental health and developmental disorders over the past few decades. According to medical data company IQVia’s Total Patient Tracker Database for 2019, almost 7 million children ages 0-17 in the United States take one or more of these medications, including over 500,000 children under the age of 5 years. Where play therapy, counseling interventions, and parent training used to be the core of treatment plans for these children, that is no longer the case.
Pharmaceutical companies have successfully pushed for more drug treatment over the last 30 years despite lack of research on safety or effectiveness for children and teens. Many children are now prescribed one or more psychiatric drugs without receiving any other form of treatment. Medications have taken precedence over other treatments in the minds of many healthcare practitioners and the general public.
The main problem with this new model of prescribing psychiatric drugs as a first line or add-on treatment for children is that it hasn’t been very effective. The vast majority of the psychiatric medications prescribed to children are used “off-label,” meaning they are used in a way other than what they have been FDA approved to treat in terms of symptoms, diagnosis, or age group.
What Kinds of Psychiatric Medications Are Prescribed to Children?
Globally, the most prescribed to children include stimulants (such as Ritalin and Adderall), selective serotonin reuptake inhibitors (SSRIs, such as Prozac and Zoloft), and antipsychotics (such as Risperdal and Abilify). Several other classes of psychiatric drugs are prescribed for children as well, including benzodiazepines to reduce anxiety and panic (such Ativan and Xanax), antihypertensives to reduce hyperactivity and impulsivity (such as Clonidine and Tenex), and so-called mood stabilizers (such as lithium and Depakote). Again, most of these medications are prescribed off-label for symptoms in children, and dosing is left up to the best guess of the prescriber.
Stimulant medications, generally used symptoms in children labeled as having ADHD, have been the most widely researched and are thought to be safe and effective for some children in the short term. However, longer term studies have shown that there can be significant side effects, and that after two or more years on the medication there is no benefit in children who take them compared with children who never took the drugs. Antidepressant and antipsychotic medications have very little research evidence for use in children under the age of 18, and no longer-term studies to show the potential problems that may occur later on. Research that has been done on antidepressant medications shows that even positive responses are minimal and carry with them a significant risk of adverse side effects. Studies on antipsychotic drugs in children tend to focus on diagnoses of autism or bipolar disorder, and the evidence indicates that high rates of adverse effects are common, even when symptom improvement occurs.
What About Multiple Medications?
As if it weren’t concerning enough that so many children take psychiatric drugs, it’s even more concerning to see the rate of polypharmacy with children. Polypharmacy generally refers to taking more than one medication at a time, and there is virtually no research evidence to support the use of psychiatric polypharmacy with children. A recent study looking at data from Medicaid patients found that 39.5% of children ages 0-17 years were taking more than one medication across more than one class of drugs. The highest rate of polypharmacy was found in children given a bipolar disorder diagnosis. Approximately 73% of those children were treated with polypharmacy, while 69% of children with a “Disruptive Mood Dysregulation Disorder” diagnosis and 69% of children diagnosed with schizophrenia received polypharmacy treatment. Another recent study in the journal Pediatrics found that for children diagnosed with autism spectrum disorder, 64% had filled at least one psychiatric drug prescription, 35% had two or more classes of medications prescribed, and 15% were using medications from three or more classes at the same time. The authors concluded that prescribers are using polypharmacy with these children frequently, without research support to this practice.
At my practice in Michigan, which primarily treats young people ages 2-25 years, the average number of medications upon intake is two. However, I have seen patients with up to 10 different medications prescribed to address what their doctors believed were psychiatric symptoms. Many parents tell me that what drove them to ask questions and research the medication issue more thoroughly was when their child’s prescriber began talking about adding another medication, either to address symptoms or to manage adverse effects from the initial prescription. Most parents feel uncomfortable with this practice and are right to ask questions.
The Experience of Children and Families
The children and families I have worked with in the last 20+ years have a wide range of diagnoses and symptoms in the categories of mental health disorders and neurodevelopmental disorders. Many of the children I work with have multiple mental health diagnoses as well as physical health issues such as allergies, asthma, obesity, and various gastrointestinal problems. The majority of my clients are either taking psychiatric medication when I first meet them or have been on one or more of these drugs previously.
Because I utilize an integrative approach to treatment, many parents seek services at my clinic to help them reduce medications or avoid them altogether. Virtually all of them are concerned that their child is not improving, even with medications, and they are looking for other types of support and treatment options. Some have broached this subject with previous practitioners, only to have their concerns dismissed or to be told that their child requires medication and it is irresponsible to consider a plan that includes less medication or none at all.
I rarely meet a child whose parents have been provided enough information to give truly true consent when a prescriber recommended or initiated medication treatment. Parents and children by and large are not given thorough and accurate information or education about the potential benefits, potential risks, research evidence, potential course of treatment, or how they might be able to get off the medications in the future. I’ve had many parents over the years tell me that if they had known then what they know now they never would have accepted the prescription. Many say something along the lines of, “I don’t even know how we got to this point.”
Specific cases help illustrate the common experience and frequent problems with prescribing practices and medication treatment for children. A boy I’ll call Caleb was diagnosed with autism at age 3 and was placed on the medication rollercoaster at age 6 when his anxiety continued to increase, and he seemed distressed much of the time. What started as a prescription for an antidepressant medication (often used to treat anxiety) ballooned to four different drugs over time, with many changes along the way. By the time Caleb was 12 years old, he was taking a high dose of Lexapro (SSRI) daily, two high doses of Xanax (benzodiazepine) daily, an antipsychotic (Abilify) daily, and metformin (a drug prescribed to reduce the pre-diabetic symptoms brought on by the Abilify). He was morbidly obese as a result of these medications, and still experiencing very significant symptoms of anxiety, irritability, and agitation.
Over the course of two years, I was able to help Caleb to reduce and finally eliminate all prescription medications. He experienced significant symptom reduction and dramatically improved functioning without any psychiatric medications, and the weight gain and blood sugar issues he had developed returned to their normal baseline. This process required significant parent support, psychological interventions, neurofeedback, and moving out of an inappropriate school environment, as well as managing several previously undiagnosed, underlying medical problems: nutrient deficiencies, suboptimal thyroid function, and gut microbiome imbalances. The real issues that were causing and exacerbating Caleb’s symptoms would never have been solved with psychiatric drugs, which only led to worse problems over time.
A 17-year old girl I’ll call Rachel came to see me after being diagnosed with severe anxiety, depression, migraines, and fibromyalgia over a three-year period. She had gone from being a straight-A student involved in several activities to bedridden and unable to function even though she was taking many prescribed psychiatric medications. Told by many practitioners that she was “treatment resistant,” she was shuttled from one prescriber to the next and placed on virtually every medication in every class of psychiatric drugs. Not only did her symptoms fail to improve, but she also developed many new problems including morbid obesity, chronic constipation, gastroesophageal reflux disease (GERD), panic attacks, persistent pain, and periodic bouts of suicidality.
As she had gained a tremendous amount of weight from the antipsychotic medications (which Rachel was told would be required for the rest of her life), she’d undergone prescribed bariatric surgery. The surgery led to many serious physical complications and the addition of more medications to address them.
When I met Rachel, she was taking an SSSRI, a benzodiazepine, an antipsychotic, a sleeping pill, a non-narcotic prescription pain medication, a prescription migraine medication, a prescription reflux medication, and over-the-counter allergy and constipation medications daily. She was highly symptomatic, and desperate to feel better. We identified several root issues that were likely creating or exacerbating her symptoms, most of which had not been investigated prior. Once proper treatment and support were introduced, she was able to wean off of all but her SSRI medication over the following 14 months. Through the medication weaning process, Rachel determined that the SSRI medication made a positive difference for her, although at a much lower dose than she was taking originally, and decided to stay on it. She occasionally uses prescription pain medication as needed, and was able to return to school, work, and enjoyment of normal life activities.
I wish I could say that these cases are unique, but sadly they are not. Caleb’s and Rachel’s stories represent a persistent pattern I see daily in my practice, where children and young adults experiencing any variety of mental health symptoms are told they need medications to address their conditions, and then proceed to ride the medication rollercoaster, often for many years, without positive results. When parents raise questions about lack of improvement, the common refrain is that the child’s condition is “worsening over time,” and that more or different medications are needed. Rarely do practitioners entertain the idea that medication treatment may be making the child’s symptoms worse, or that other approaches beyond a general counseling referral may be needed in order to support the child and family.
While there are many disagreements in the fields of mental health and medicine in general about the role of psychiatric drugs and how they are best utilized, we should all be able to agree that using the lowest dose of the fewest number of medications necessary to achieve improvement makes good sense. Sadly, while most prescribers I know would agree with this in theory, my experience is that it isn’t common practice.
Read Part 2 of this essay here.
Editor’s Note: For more in-depth information on psychiatric drugs prescribed to children and youth, visit MIA’s “Psychotropic Drugs in Children and Adolescents” pages:
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.