The Impact of Pediatric OCD on the Whole Family

A study published in the March 17, 2017 issue of the Journal of the American Academy of Child and Adolescent Psychiatry  concludes that pediatric obsessive-compulsive disorder negatively affects not only the children who suffer from it, but also their parents.

At the risk of sounding snarky, I (and anyone who has a child with OCD) could’ve told you that.

Still, well-conducted studies, as opposed to anecdotal evidence, are important. If nothing else, they give clinicians and researchers concrete information to reference, study and build upon in their quest to understand OCD and how to best help those whose lives are affected by it.

The study had a good number of participants – 354 youth and their parents. As I read each finding in the abstract, I nodded in agreement, as my family (when my son Dan was dealing with severe OCD) fit the profile of those in the study to a tee.

Not surprisingly, OCD is marked by disrupted routines, stressful social interactions for the children, and poor job performance for the parents. Everyone in the family had elevated stress and anxiety levels, though I found it interesting that there is no specific mention of siblings. As far as I know, siblings were not part of the study, but of course they are also affected by having a brother or sister with OCD. While the children with OCD often felt frustration and anger, their parents were more likely to describe feelings of sadness. I, and I’m sure many of you out there, can relate to that!

Some points that I found interesting include the finding that parents often did not recognize the extent of their child’s suffering, particularly in regard to academics and socialization. We know that those with OCD can be good at hiding how they are truly feeling. Thinking back to my son Dan’s ordeal, I now realize that when I thought things were not “that bad,” they really were. Additionally, mothers seemed to be more negatively impacted by their child’s OCD than fathers were. This could be due to many factors, including the fact that mothers typically (though not always) spend more time with their children.

To me, the most important conclusion of this study by far is the fact that the more parents accommodated and enabled their children, the more the entire family became impaired.  If you’ve been following my blog for a while, you might know that this is one of my pet peeves: Parents and loved ones need to be educated about how to properly deal with OCD. What loving parent hasn’t inadvertently enabled their child because they wanted to take away their pain, only to later learn (or maybe not) that their actions have only made things worse? Because the proper way to deal with OCD involves going against our instincts, family members need to be educated.

It is my hope that the results of this study will lead to more awareness and better treatment for OCD, not only for those suffering from the disorder, but for those who care for and support them as well.

 

 

 

 

 

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Symptoms of OCD?

For those who think they, or a loved one, might be suffering from obsessive-compulsive disorder, it is easy to go online and find a list of common symptoms.

In some cases, people’s obsessions and compulsions might be quite obvious and they will present with a “classic case” of OCD. Those who fear contamination (obsession) and wash their hands until they bleed (compulsion) are a good example.

But it is not always that easy to figure out if you or someone you care about has the disorder. Some symptoms of OCD might not seem like symptoms of anything at all. For example, at least a year before we knew my son Dan had OCD, he stopped choosing what clothes to wear in the morning. “Just pick out anything for me; I don’t care what,” he’d say. While I might have thought this behavior was a little odd for a teenager, it never once crossed my mind that Dan was consciously avoiding making decisions. I now know that this is not an uncommon symptom of OCD. If Dan didn’t have to decide what to wear, or what movie to go to with friends, or give his opinion on anything, then he would not be responsible for anything bad that might happen as a result of his decision. As I’ve said before, while intellectually Dan knew his thinking made no sense, there was always doubt, another mainstay of OCD; “What if I wear my blue shirt and then someone I love dies?”

Reassurance seeking, such as asking “Are you sure everything is okay?” is a common compulsion in OCD. As a matter of fact, when Dan entered his residential treatment program, cell phone use was discouraged because so many clients would continually call home for reassurance. I told Dan’s social worker that he never asked for reassurance, and that was true. But what he did do was routinely apologize for things most people would never apologize for.  He’d say things such as “I’m sorry I spent so much money at the supermarket,” (when he actually hadn’t) and I’d answer, “You didn’t spend that much; you have to eat.” Now it is easy for me to see that Dan’s apologies were a form of reassurance seeking and my responses to him were classic enabling.

Of course a lot of people avoid making decisions, and I’m sure just as many are always saying they’re sorry. I am in no way suggesting they all have obsessive-compulsive disorder. What I am saying is that OCD can manifest itself in countless ways; no two people with OCD will have exactly the same symptoms. Couple that with the knowledge that there are still many therapists out there who don’t have a good understanding of OCD symptoms and treatment, and you might have the makings of a misdiagnosis.

So this is one more reason to continue to advocate for OCD awareness. The more knowledgeable we all are about the signs and symptoms of OCD, the better position we will be in to fight the disorder head on.

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When to Seek Treatment for OCD

by master isolated images freedigitalphotos.net

I’ll be sharing some of my older posts for the next few weeks. This one first appeared in November 2011….

Most experts agree it is time to seek treatment for obsessive-compulsive disorder when it “interferes with your daily life.” While “interfering” can mean different things to different people, it is generally described as having obsessions and compulsions that take up more than an hour a day of your time.

While a lot has been written about recovery avoidance in OCD, what I’m talking about are cases of OCD that might not be that severe. Many people with OCD and their families might avoid even discussing treatment options because it appears that the situation is just not ”that bad.” Of course, because those with OCD are adept at hiding their symptoms, they are often the only ones who know the real extent of their disorder.

To me, before things get “that bad” is the perfect time to seek treatment and get started on exposure and response prevention therapy. The less entrenched OCD is, the easier therapy will be. OCD rarely goes away on its own, and the longer treatment is delayed, the more time OCD will have to latch on to its victim, making recovery even more difficult in the future. Remember that OCD is an insidious disorder that does whatever it can to undermine a person’s desire to get well.

The decision to seek treatment for OCD is sometimes shrouded by fear, shame, and embarrassment, and it might just seem easier all around to ignore what is going on. I think this is a huge mistake. If you suspect you have OCD, are concerned about a loved one, or aren’t really sure what’s going on, please make the effort to find a therapist who specializes in treating this disorder. The sooner the better, because it might not take long for “I can handle this” to turn into a life totally controlled by OCD.

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An App to Enhance OCD Treatment – nOCD

by stuart miles freedigitalphotos.net

I recently had the pleasure of speaking with Stephen Smith, the face behind the app known as nOCD. I was impressed with Stephen’s intelligence, enthusiasm, and passion as he explained why he created this app and how it acts as an effective supplement to therapy  for those who are battling obsessive-compulsive disorder.

Stephen knows what he is talking about. He suffered from severe OCD himself, and like many, was frustrated by the lack and availability of good, quality care. While nOCD is not meant to be a substitute for ERP therapy, the evidence-based psychotherapy used to treat OCD, it can greatly enhance this therapy and treatment in different ways.

While reaching individuals with OCD is of the utmost importance to Stephen, it is not his only goal. He knows how helpful and necessary support is when dealing with OCD, and his app provides ways to connect with others and even create your own support groups. The importance of community and raising awareness of OCD are woven into the app.

I don’t have OCD so I haven’t used the app myself, but with Stephen’s knowledge and commitment to helping those with the disorder, along with an impressive team of professionals, my guess is it’s a worthwhile addition to anyone’s OCD toolbox. You can download the app for free by clicking on the nOCD icon on my blog’s sidebar.

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OCD and Brain Inflammation

A very interesting study was published this past week in JAMA Psychiatry stating that brain inflammation in those with obsessive-compulsive disorder is significantly elevated (by more than thirty per cent) compared to those without the disorder.

Dr. Jeffrey Meyer, senior author of the study and Head of the Neuroimaging Program in Mood & Anxiety at the Centre for Addiction and Mental Health (CAMH) Campbell Family Mental Health Research Institute, says:

“Our research showed a strong relationship between and OCD, particularly in the parts of the brain known to function differently in OCD,”…..”This finding represents one of the biggest breakthroughs in understanding the biology of OCD, and may lead to the development of new treatments.”

Another very interesting finding from the study is that researchers found a connection between resisting compulsions and brain inflammation. Those with OCD who experienced the greatest stress or anxiety when they tried to avoid acting out their compulsions also had the highest levels of inflammation in one particular brain area. This factor could prove helpful in determining who might benefit the most when and if new treatments are developed targeting inflammation.

I do think it’s worth mentioning that while this study seems to hold great promise, so much more work needs to be done. There were only twenty participants with OCD in the study, and twenty in the comparison group.

And as often happens, new findings generate more questions. Where does this inflammation come from? Where (if anywhere) does PANDAS fit into this picture? How will this information lead to better treatments for those with OCD?

I’m always excited and heartened to learn of new research and discoveries related to OCD, and this does appear to be a breakthrough of sorts. We are learning more and more about obsessive-compulsive disorder thanks to dedicated researchers who work tirelessly to unlock the mysteries of this potentially devastating disorder.

 

 

 

 

 

 

 

 

 

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ERP Therapy – An Analogy


by winnond freedigitalphotos.net

by winnond freedigitalphotos.net

 

This post first appeared on my blog in January 2012….

One of the reasons I became an advocate for OCD awareness was to spread the word that exposure and response prevention (ERP) therapy is the therapy of choice for treating obsessive-compulsive disorder. Unfortunately, I sometimes come across first-person blogs where those with OCD equate this therapy with torture, and therefore refuse to try it. Others feel it might be helpful but are just too afraid to attempt it.

On his blog, Dr. Steven Seay compares ERP therapy to an exercise program, and using this analogy, really sets the record straight as to what this therapy involves when dealing with a competent therapist:

I often think about ERP as an exercise program for your brain. Why do people exercise? Typically to improve their quality of life in some way — be it related to health, aesthetics, or the way it makes them feel. People don’t take up exercising for no reason at all–it’s always purpose-driven. This is just like ERP. Why would you do it? Because it’s going to enhance your life in some way.

The analogy can be taken a bit further, though.

Exercise is not a singular activity. It’s something that’s often based around targeting a particular muscle group or certain aspect of health. People who want big biceps do different exercises than people who want to lose weight. This is similar to ERP. People who want to be less bothered by unwanted thoughts (e.g., thoughts of hitting someone with your car) do different exposures than someone who is afraid of contracting a deadly disease. The form of the “exercise” reflects a specific therapeutic goal.

Moreover, there are multiple ways to target the same muscle group. People who want to work on their abs might consider crunches, leg lifts, push-ups, etc. In ERP, there is no one exposure that will help you get better. Instead, there is an array of options that might work for you.

There’s also the hierarchical nature of exercise. If you want to get stronger, it’s smart to start with light weights and build up to heavier weights. It would be downright dangerous to attempt a 500lb bench press without proper training. In ERP, going for that “10″ on your hierarchy is ill-advised at the beginning of treatment. Before going there, you need to lay the proper groundwork first. A gradual approach might take more time, but it will get you to the destination without subjecting you to unnecessary injuries.

Finally, the world is full of different types of trainers. Not everyone is a drill sergeant. The best trainers will listen to you, work with you, and try to understand where you’re coming from. They’ll then use their expertise to design an individualized plan for you that is based on your goals, preferences, and perspective. The best therapists I know follow this same approach to treatment.

My position is that if you’re completing an exposure under duress, you’re unlikely to benefit from it. It’s the process of choosing to face your fear (and willingly embracing the uncertainty that comes with it) that really makes the difference.

Thank you, Dr. Seay.  Here’s hoping your words inspire all those with OCD to “hit the gym!”

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Children, Rituals, and OCD

 

by teerapun, freedigitalphotos.net

by teerapun, freedigitalphotos.net

 This post originally appeared November 2011:

When my daughter was two or three years old, she had a bedtime ritual where she lined up ten of her dolls and stuffed animals on the floor. They had to be in the right order, at the right angle, touching or not touching each other in a specific way. If these “friends” were not arranged just so, she would get upset, and then have to adjust each and every one of them until she got it just right. Then she could go to sleep.

She does not have OCD.

Rituals are a normal part of childhood, and they play an important role in children’s overall development. Rituals create order for children as they grow and try to make sense of the world around them. For example, a bath, story time, and cuddles every night before bed give children structure and a sense of security. They feel safe; they know what to expect.  Everything is as it should be.

Wow. Rituals never sounded so good.  So how could something so wonderful cause so much distress?

Typically, children without obsessive-compulsive disorder will be soothed and comforted by their rituals, whereas a child with OCD will experience only a fleeting calm. Anxiety and distress will always return, and the child will feel compelled to complete the ritual again. As I discussed in this previous post on rituals, this feeling of “incompleteness” is a telltale sign of OCD.

Another thing to watch for if you think your child might have OCD is the amount of time he or she spends ritualizing, and how much it interferes with his or her life. Typically, spending an hour or more a day completing rituals should raise some red flags.

Diagnosing OCD in young children is not always easy, as there are many ways the disorder can manifest itself. And OCD is tricky. Just when I was really starting to worry about my daughter, she began to care less and less about the arrangement of her “friends.” On the other hand, my son, who has never lined up anything in his life, developed OCD.

It is known that OCD often begins in childhood. I know this is no surprise to a lot of people, as I’ve often been told, “I’ve had symptoms of OCD for as long as I can remember.” I’d love to hear from those with OCD. When did you first realize you had the disorder, or that something was wrong? What were your early symptoms? How did your families react? Chances are the more we share, the more people might see themselves or their children, and seek appropriate help.

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