OCD Chicago

DAN’S STORY (age 17)

By Janet Singer

“Despite many obstacles, Dan fought his way back from severe OCD and reclaimed his life.”

While there are many stories of people suffering from OCD for years and years before receiving a correct diagnosis, this was not the case with my son Dan. At the age of seventeen, with the help of the internet, he diagnosed himself. He had known something was wrong for at least a few years, and now he was able to put a name to it. When he mustered the courage to tell me his secret, my response was, “OCD? What are you talking about, Dan? You never even wash your hands!” Shows you how much I knew about OCD back then.

Truth be told, Dan had no obvious symptoms at the time. He had seemed a little anxious, but he was waiting to hear from colleges. Who wouldn’t be nervous? And he had a lot of trouble sleeping, but that was nothing new. There were a couple of other odd occurrences. Dan had recently stopped eating ice cream and would not go into our backyard pool. But these were isolated incidences that certainly never raised any red flags to indicate that he may be suffering from an anxiety disorder.

So back to the diagnosis. Dan’s pediatrician confirmed that he did indeed have OCD and thought it would be best if Dan connected with a therapist. He started seeing a highly recommended psychologist twice a month who kept telling us not to worry. Dan was fine. No, he wouldn’t need a therapist in college. No, there’s no special treatment he needed. Just keep coming every two weeks. That’s right, Dan is fine.

While deep down I had my doubts, it was easy to push them aside and believe every word the psychologist said, because after all, he was the expert. If the expert says Dan is fine, who am I to argue? Dan went off to attend his dream college fifteen hundred miles from home and at first it seemed like the therapist was right. Dan was fine. A few weeks before second semester ended, however, Dan took a turn for the worse. To me, it all seemed to happen so fast. In reality, though, Dan’s OCD had been festering slowly but surely throughout the year. We were just not with him to witness it.

By the time I arrived at Dan’s dorm, he had not eaten in over a week. He was spending hours at a time sitting in one particular chair, hunched over with his head in his hands, doing absolutely nothing. He could not enter most of the buildings on campus, and could only do minimal amounts of work at certain times of the day. To top it all off, he was self-injuring. My son was in the throes of severe OCD.

Despite his condition, Dan desperately wanted to complete his freshman year of college. He had worked very hard to get to where he was, and was not about to give up. And so with daily phone calls to our close friend Mark (who just happens to be an amazing clinical psychologist) I was somehow able to help Dan finish the semester successfully.

But Dan was still a very sick young man, and his summer was spent at a world-renowned residential program specializing in OCD. It was here that he stopped self-injuring. It was here that he also finally got the right treatment, Exposure Response Prevention (ERP) Therapy, and I credit this therapy for literally saving his life. But there was a tradeoff. In order for Dan to function well enough to participate in ERP Therapy, he needed medication. Within two weeks of entering the program he was taking fluoxetine (Prozac), clonazepam (Klonopin), and risperidone (Risperdal).

Dan’s progress was slow, but it was still progress, and with a strong support system in place (a psychiatrist, a therapist who specialized in OCD, and his family) he headed back to college for his sophomore year. Dan struggled but never gave up. Risperidone was replaced with aripiprozole (Abilify). Fluoxetine was replaced with venlafaxine (Effexor). At this point Dan was in rough shape and was barely able to complete his schoolwork. But he still forged ahead. While his OCD was in check, his anxiety grew and he was now depressed. I wondered if my son would ever again be able to function well in society, or even worse, survive.

At one point, Dan’s psychiatrist prescribed lisdexamfetamine (Vyvanse) for the purpose of “enhancing the effects of the other meds”. I didn’t really understand that reasoning, as I know Vyvanse is prescribed for ADD/ADHD, which Dan did not have. I questioned this decision and didn’t really get a satisfactory answer. But we trusted the doctor, and so Dan began taking Vyvanse.

The Vyvanse certainly kept Dan awake, but after a month of taking it, he became even more depressed and anxious. His doctor immediately cut Dan’s dosage in half, and three days later told Dan to stop the medication entirely. The results were disastrous. Dan could barely stay awake at all for the next four days, and he admitted to having thoughts of suicide. Not knowing where to turn and certainly not trusting his psychiatrist at this point, we brought Dan to a mental health facility near his college. He stayed there for a week and we were told they would get him “back on track” by reducing his meds. Unfortunately the opposite happened. By the time he left this facility, he was taking Klonopin, Abilify, Effexor, Adderall and Atarax.

I had had enough. This was not my son anymore. This was a walking zombie. I “interviewed” several psychiatrists on the phone, and made an appointment for Dan to see the one that felt he should probably be on fewer medications. I also made an appointment for Dan to have a complete physical.

Connecting with these two new health-care providers was the best thing we could have done. Dan’s physical and subsequent tests revealed tachycardia (fast heart rate), sky-high triglycerides, possible pericarditis, and a thirty-five pound weight gain in just a few months. His hands were also extremely shaky, as if he had Parkinson’s disease. These symptoms and conditions were all attributed to the drugs that he was taking.

Dan’s new psychiatrist began weaning him off of each medication, one by one. The results were amazing to watch. It was as if layers and layers of crud were being scraped off of Dan and glimpses of my son were emerging. His test results returned to normal. The extra weight dropped off. His anxiety and depression lifted, and in Dan’s own words his OCD was “practically non-existent.”

I thought back to when Dan returned to school after his summer at the OCD Clinic. He was taking his meds and hanging on by a thread. I remember thinking, “If he is this bad off with all of these meds, I hate to think what he would be like without them.” It never occurred to me at the time that the meds could be the problem.

Now I’m not recommending that everyone stop taking medication for OCD. I am not saying that at all. I do believe that at some point Dan probably needed many of the meds he was taking. What I am saying is that we all need to be acutely aware of the potential side-effects of some of these heavy-duty medications. Make sure you get regular physical exams, and not just the quick one your psychiatrist gives you. Trust your instincts. If something doesn’t sit right, ask questions. Get another opinion. Do your own research. Do whatever it takes to make the most informed decision you can for you or your loved one.

Of course Dan’s story is far from over. He is only twenty-one. But he has been completely off of medication for two years now, is back at school, and is living life to the fullest. Despite many obstacles, Dan fought his way back from severe OCD and reclaimed his life. He is living proof that OCD, no matter how severe, is treatable.

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