Your Child Can Get Better With Effective Treatment
I hope my story gives others hope as you can live a completely happy and fulfilling life even with OCD.
My battle with Obsessive Compulsive Disorder started out like so many others. The earliest symptoms I can remember appeared around age 8. I had started to develop a prayer routine at night which, in my OCD mind, I believed would keep my loved ones safe. I felt I had to say my family member’s names 8 times, touch the right side of the wall after, blink 8 times after that and the list goes on. With so many rules and restrictions, I could not complete the prayer “perfectly” no matter how hard I tried. I vividly remember it was late at night and my mom was still up cleaning. I ran down to her and burst into tears because I could not get my prayers right and was so worried that my loved ones would be hurt because of this. This was the early 90’s and my parents had no knowledge of OCD. My mom brushed this off as a silly childhood quirk and was not at all alarmed that something more serious might be happening.
Obsessions and compulsions continued on and off throughout my childhood and changed themes but usually fixated on my health and a fear of dying from AIDS, cancer, leukemia, appendicitis, a brain tumor, etc. My OCD was more just background noise while I was young but became stronger when I was getting ready to leave for college. For me, it seems that anytime I have a major transition in my life which involves a large change my OCD comes on full force. I have had two major episodes; one being going to college and the other being a relocation my husband and I made out of state for his job.
With my first episode, I had heard bits and pieces here and there about OCD and figured I had it but so badly wanted to believe I did not. I compulsively asked my parents over and over whether I had OCD and if I was going crazy. Since I functioned fine and was a successful high school student, they assured my that everything was fine with me and that I did not have OCD. I even insisted on an appointment with my then pediatrician who was uneducated on OCD and as well assured me that I was fine. Once I got to college the stress leveled out and I was doing very well again.
My second and by far most destructive episode came seven years later. At this point, I had completely forgotten about OCD and thought it was just some quirk and phase I went through when I was younger. A lot of stress happened to me in the span of a year; a breakup and makeup with my now husband, my grandma passed away, I got engaged, was looking at a possible relocation and trying to figure out a career. At some point this all came to a head and my long, lost friend OCD came back with a vengeance.
Like all sufferers, this was a horrible time of anxiety for me that lasted a while. I lost a ton of weight, had a very hard time sleeping, could not concentrate on work, and was constantly seeking reassurance and barely functioning. My saving grace throughout all of this was finding OCD Chicago and coming into contact with its founder, Susan Richman. I was able to get in therapy and eventually on medication. My husband and I wound up relocating to Florida where I am continuing treatment and am doing much, much better!
My testimonial for OCD Chicago is a long time coming because I thought that in order to share my story I had to have complete victory over OCD. The biggest lesson I have learned over the last year, and that Susan really helped me to accept, is that OCD is a disorder that I need to accept as part of my life for the long haul and continue to manage. For the periods of time when I am feeling well, and stress is low, I do just fine. When stress is higher I have my struggles but have learned to manage much better. I recently came off medication as my husband and I would like to start a family soon and have just begun therapy again so that I can stay on top of my OCD. I hope my story gives others hope as you can live a completely happy and fulfilling life even with OCD. I am living proof.
“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.
Read More Kids’ and Parents’ Stories
In recent years we have seen an increased focus on mental health during pregnancy and the postpartum period. One reason for this focus is a number of highly publicized cases in which parents suffering from postpartum depression or psychosis end up actually harming their children. Another important reason for turning attention toward these problems is that we are learning how maternal (mental) health can negatively affect the mother-infant bond and the child’s development.
