Editor’s Note: To protect the anonymity of her son, this author has published under a pseudonym.
With the help of the Internet, my seventeen-year-old son Dan diagnosed himself with obsessive-compulsive disorder. His only outward symptom at the time was an overall increase in general anxiety, which I had mistakenly attributed to his waiting for college acceptances. When Dan told me his secret, my first response was, “But you never even wash your hands!” Boy, was I clueless as to what OCD really is. I brought him to his longtime pediatrician who confirmed Dan’s diagnosis, prescribed Prozac, and suggested he see a therapist.
So off he went to the “local therapist,” the clinical psychologist in town whom all the teens liked. Dan liked him too. He met with this therapist biweekly for four months before leaving for his dream college fifteen hundred miles from home. We now realize that amounted to approximately ten sessions of the wrong kind of therapy. When my husband and I asked this doctor what we could do to help support Dan in college, he said, “Dan is fine. There’s nothing you need to do. His OCD is no big deal.”
Fast-forward eight months. Dan sounded so bad on the phone that we insisted he seek help near school. The psychiatrist he was referred to increased his dosage of Prozac, gave him a handful of Abilify samples, and prescribed Xanax as needed. After speaking with this doctor, I caught the first flight I could to be with my son; the condition I found him in shocked me. He hadn’t eaten in more than a week and he was spending hours at a time sitting in one particular chair, doing absolutely nothing. He couldn’t enter most buildings on campus and had isolated himself from his friends. I was numb with fear at the realization he was also self-injuring. Come to find out, his hometown therapist was wrong; Dan’s OCD was a pretty big deal. But he was determined to finish the semester, and so I stayed with him, helping him fight the OCD as best I could. Amazingly, he was able to successfully complete his freshman year of college. Once at home, however, he’d spend entire days just lying on the floor.
Dan’s next stop was a world-renowned residential treatment center for OCD sufferers. Here they saved his life but shattered his dreams, convincing him that even though he had made great strides toward overcoming his obsessive-compulsive disorder during the nine weeks he was there, he wasn’t well enough to go back to school. Dan’s program of study was sequential and competitive, and by not going back, he would permanently give up his coveted spot that he’d worked so hard to earn. The staff had no idea what Dan’s dreams and passions were; they only knew him as an “obsessive-compulsive.”
Because he was nineteen, Dan was encouraged to make these major life decisions on his own, without the input of family. We were informed of very little that went on at the treatment center and didn’t even know until after the fact that Abilify had been replaced with Risperdal (which brought Dan temporary double-vision), Klonopin was substituted for Xanax, and his Prozac dosage was upped to 80 mg, a high dose not unheard of for those with OCD. But when Dan nervously announced he would not be going back to school, I knew this was not coming from him. He had actually chosen this treatment program because he could go during the summer and not miss any school. I realized that while the experts might know OCD, I knew my son. The “real Dan” would never have given up on his dreams so easily, as he proved a few months earlier, when in the worst shape of his life, he’d refused to withdraw from school. My husband and I insisted he leave the treatment center (we could only do this because we were paying for it) and continue on with his life. The staff, angry because we crossed them, actually yelled at us, threatening, “You’ll be sorry.”
Back at school, Dan had a good support system in place. Not only was he seeing a clinical psychologist who specialized in treating OCD, he also had the support of his family. Because my husband and I both work from home, we decided to temporarily relocate to be near Dan. We found a new psychiatrist to monitor his Prozac, Klonopin, and Risperdal.
Away from the confines of the residential treatment program and back to the rigors of school, Dan’s anxiety increased. The psychiatrist “tweaked” his meds and he was now taking Effexor, Abilify, and Klonopin. Dan had noticeable side effects, including hand tremors so severe he could barely write, and a twenty-five pound weight gain in a short amount of time. A quick physical also revealed tachycardia (fast heart rate), and triglycerides that “needed to be watched.” When I expressed concern to the psychiatrist, I was seen as overprotective and told, “Your son is a very sick young man. He needs these meds.” When I asked if Dan should see an internist I was told it wasn’t necessary. After all, the psychiatrist was a medical doctor; he would continue to monitor him.
When my son complained of constantly losing things, the doctor diagnosed him with attention deficit disorder (ADD) in addition to OCD. “They often go together,” he said. Some quick research convinced me there was no way my son had ADD. Even though I was vehemently opposed, the doctor persuaded Dan to try Concerta, a stimulant. He couldn’t sleep for three nights, at which point he was switched to Vyvanse. Though Dan successfully completed his first semester of sophomore year, I was worried about his physical health; the side effects had intensified. Dan downplayed his symptoms, saying he felt “fine.”
His OCD waxed and waned and at the beginning of the next semester, he unexpectedly became depressed and developed some tics that manifested as twitching and wincing. The psychiatrist instructed us to cut his Vyvanse dosage in half for one day and then discontinue it altogether. I’d always thought stimulants needed to be weaned off slowly, but the doctor assured me Vyvanse was “different.” The results were disastrous; we could barely wake our son for four days. When the psychiatrist denied this turn of events was related to Vyvanse withdrawal, we turned to the mental health professionals at our son’s college, who advised us to take him to a local short-term mental health facility. Frightened to our core, we went there immediately.
At this hospital, the admitting nurse who spoke with Dan informed me he had experienced recent thoughts of suicide. A surge of terror ran through me. He was admitted to the facility, and as I left, the nurse handed me his shoelaces, along with a list of prohibited items. At home, I immediately went online and read:
Abrupt cessation of amphetamines such as lisdexamfetamine [Vyvanse] can cause extreme fatigue and severe, even suicidal, depression in adult patients.
My intuition, my gut, had been correct. These meds were hurting my son, not helping him. It was so obvious. It was at this point that I finally learned to listen to myself; to trust my instincts. I was relieved, thinking that now the process of weaning Dan off these meds would begin. That relief was short-lived, as my son was released from this facility five days later, on more drugs than when he entered. He was now taking Abilify, Effexor, Klonopin, Adderall and Atarax/Vistaril. He was a walking zombie, and I’d had enough. I forged ahead on a new mission: to find good doctors who would listen to me, reduce Dan’s meds, and get my son back.
After interviewing several psychiatrists on the phone, we settled on the doctor who seemed the most open-minded. At our first meeting, he quickly determined Dan did not have ADD and began weaning him off Adderall. He advised Dan to see an internist, who suspected he had pericarditis (inflammation of the pericardium, the sac surrounding the heart) and sent us directly to a cardiologist. Dan was also easily agitated and now had sky-high triglycerides, tachycardia, tremors, and a thirty-five pound weight gain. Dan was not well, emotionally or physically. He was always exhausted, had no motivation for anything, and was depressed.
The new psychiatrist agreed to wean Dan off all his meds. He had a particularly hard time getting off Effexor, experiencing “brain zapping” side effects that felt like lightning bolts in his head. He needed to be weaned extremely slowly, taking one or two more beads out of each capsule weekly. Gradually, glimpses of my son began to emerge, as if layers of crud were being scraped away and the real Dan was starting to shine through. Eventually, his test results returned to normal. The extra weight dropped off. His anxiety and depression lifted, and his OCD, in his own words, was “practically non-existent.” One day I noticed something unusual about my son, and it took me a moment to figure out what it was: He was smiling. When he was finally weaned off all his meds, the doctor began discussing replacement options. But Dan was doing so well! I insisted he remain drug free for now: watchful waiting, as they say. The psychiatrist agreed, but said, “He’ll need to be on something.”
That was over three years ago, and Dan continues to do well without any medication. His OCD is classified as mild. He has graduated from his dream college and is working, sharing an apartment with a friend, and living life to the fullest. We have our son back.
Recounting Dan’s story, I still find much of it unbelievable. I’m not talking about the way he was treated; I’m talking about how naïve I was throughout his journey with severe obsessive-compulsive disorder. What’s that old saying? “If I’d known then what I know now.”
Though you’d never know it from Dan’s story, I have always been wary of drugs. I rarely even take over-the counter medications, and never gave my children cough medicine or anything that wasn’t absolutely necessary. So why did I allow Dan to be over-medicated? Good question.
First, once Dan entered his residential treatment program, I lost all control over what he was given. I admit, however, that even if he were still under my and my husband’s supervision, chances are we would have not argued against the drugs. The reason? We were desperate. Our son was slipping away from us, and we were told, many times, that the way to get him back was through the trial and error of various medications, until the “right combination” would make him well again. Of course that elusive right combination was never found, but we trusted his doctors, and believed everything they told us. They seemed to know what they were talking about. After all, they had “seen it all before.” The patronizing looks I got whenever I questioned the validity of taking all these drugs quickly put me in my place. I didn’t know about Mad In America, or the other websites and blogs that discussed the dangers of all the meds my son was taking. Every ounce of energy I had was spent dealing with this crisis and trying to keep not only Dan, but my whole family, afloat.
There is so much that is wrong with Dan’s story: too many medications. Drugs prescribed off-label. Little to no monitoring of his physical health. Side effects of medications ignored. Parents not respected or taken seriously. Doctors who cannot admit they might have made mistakes. Misdiagnosis (ADD). Prescribing of Vyvanse which is known to exacerbate OCD. I could go on and on. And the worst part of all this? It’s most likely happening to someone else right now.
Once Dan recovered, I felt compelled to share our story in the hopes of helping others. I want to spread the word that OCD, no matter how severe, is treatable with Exposure Response Prevention (ERP) Therapy, not a myriad of drugs. I’ve been blogging regularly for over two years now and continually hear from those who have been through variations of my son’s story. Unfortunately, not everyone has been as lucky as Dan, and that breaks my heart. To me, the only thing worse than having a serious illness is having a serious illness that’s treatable, yet not receiving proper treatment.
Two years ago when Dan turned twenty-one, my husband offered to take him out for a beer. Dan refused. He won’t touch the stuff. “I know what it’s like not to think or feel clearly,” he said. “I prefer to be in control.” Wow. No drugs. No desperation. And he’s in control. How great is that? This is my dream for all OCD sufferers.
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.