And The Winners Are……..

Happy OCD Awareness Week to everyone, and I hope you’re planning on taking part in some of the great events planned for the week.

I’m happy to report that the results of my book giveaway are in and three winners have been randomly chosen to receive a signed copy of Overcoming OCD: A Journey to Recovery. The winners are:

Morgan (My OCD Voice)

Stephanie

Ashley Gage Owens

Please email your mailing address to me at ocdtalk@yahoo.com.

Congratulations to the winners and thank you to all who entered!

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Atypical Symptoms in Pediatric OCD

In over ten years as an advocate for OCD awareness, I have seen little improvement in the understanding of what OCD really is. While it can be annoying when the general public doesn’t “get it,” it can be downright dangerous when the lack of understanding comes from healthcare professionals.

We tell parents of children with OCD to connect with OCD specialists (of which there is a shortage, but that’s for another post), but first they need to know that their children have OCD.

It shouldn’t be that difficult to get diagnosed, should it? Typically, clinicians who want to rate the severity of obsessive and compulsive symptoms in children and adolescents use the Children’s Yale Brown Obsessive Scale (CY-BOCS) checklist. This tool can be extremely helpful for clinicians, especially in diagnosing more “straightforward” cases of OCD. Still, many cases of childhood OCD continue to be undiagnosed or misdiagnosed.

In a July 2018 article published in Comprehensive Psychiatry titled “Atypical symptom presentations in children and adolescents with obsessive compulsive disorder,” the authors detail two distinct types of atypical OCD symptoms found in 24 children and adolescents. They explained how these symptoms are part of a larger clinical picture, not a feature of an alternate condition such as psychosis or autism spectrum disorder, as sometimes thought. As explained here:

Twelve of the children had obsessions rooted in a primary sensory experience (such as auditory, olfactory, or tactile) that they found intolerable and which was sometimes linked to specific people or objects. To soothe or avoid the associated sensory discomfort, patients were driven to engage in time-consuming repeated behaviors. Many of these patients struggled with ordinary activities such as eating or wearing clothing and can be at risk of seeming to exhibit symptoms of autism spectrum disorder, especially when the patient has a level of self-awareness that leads them to conceal the obsession behind the behaviors.

The other 12 children had obsessions rooted in people, times, or places they viewed as disgusting, abhorrent, or horrific, and which led to contamination fears connected to any actions or thoughts they saw as related to these obsessions. These kinds of contamination obsessions could result in concrete contamination concerns but more often resulted in abstract, magical-thinking fears of specific, highly ego-dystonic states of being. When the fear was a reaction to a particular individual or individuals, the obsession most often resulted in avoidance behaviors designed to placate a fear of acquiring a characteristic or trait of the individual by contagion. Patients exhibiting these symptom presentations are at risk of being diagnosed with psychosis.

In a different case study a ten-year-old boy was misdiagnosed with schizophrenia and put on an atypical antipsychotic, which only exacerbated his OCD. What I find particularly heartbreaking about cases such as this one is the fact that atypical antipsychotics (in this case aripiprazole) have been known to exacerbate the symptoms of OCD. How many children are misdiagnosed and never receive a correct diagnosis?

Obsessive-compulsive disorder is complicated and I have connected with a number of people whose family members (or they themselves) have been misdiagnosed with autism spectrum disorder, schizophrenia, and even Bipolar Disorder. As we see, these misdiagnoses can have devastating effects on the person with OCD, not only because proper treatment is delayed, but because therapies used for other disorders can make OCD worse.

Health care professionals need to be better educated about OCD, so at the very least, it will be on their “radar screen” when evaluating patients. Obsessive-compulsive disorder has the potential to destroy lives, but it is also very treatable – once you know you have it.

International OCD Awareness Week and Book Giveaway!

by stuart miles freedigitalphotos.net

October 7-13, 2018 is International OCD Awareness Week. The IOCDF and its affiliates across the country are sponsoring all types of programs, events, and celebrations. Some will be educational and informational, while others will focus on raising awareness of OCD (check out the Mental Health Advocacy Capital Walk). In addition, there will be training programs for professionals as well as lots of events through social media! Take a look at this link to see what’s happening and how you can get involved.

In honor of International OCD Awareness Week, I will be giving away three signed copies of my book, Overcoming OCD: A Journey to Recovery. Originally published in January 2015, the paperback version was released in  November 2017:

To enter the giveaway, just leave a comment on my blog by Sunday, October 7, 2018. I will then randomly choose three winners and announce the results on my blog.

Good luck to all who choose to participate!

Where are the Obsessions?

A version of this post first appeared on my blog in December 2013…….

While I believe some progress has been made in terms of OCD awareness and understanding, I also think we still have a long way to go. Quite often OCD is still very much misunderstood by the general public.

Why is this? Certainly misrepresentation of the disorder in the media plays a big part in this lack of understanding about OCD. Unless your life has been touched somehow by obsessive-compulsive disorder, you are unlikely to truly grasp what the disorder entails.

I was recently thinking back to when my son Dan first told me he had OCD. I knew as much about it at the time as most people who had no direct experience with it. As I’ve shamefully admitted before, my initial response to him was, “Really? But you never even wash your hands!”

Aha. What I was focusing on, and what I think those who know little about OCD pay attention to, are the “compulsions” part of the disorder. In many cases, this is the concrete part of OCD; the stuff you can actually see. (I say “in many cases,” because sometimes, as in Dan’s OCD, compulsions are not visible. This is sometimes referred to as Pure O.) Washing hands, picking up twigs, tapping the wall, checking the stove, flicking the light switch on and off. This is where OCD gets its “cute and quirky” reputation, from these observable compulsions. So an outsider looking in might think,”Sure, it’s a bummer that he has to check his stove twenty times before he leaves the house, but it’s not really such a big deal.”

Of course, those of us who know more about OCD realize these noticeable compulsions are only part of the story. It is the obsessions, the crippling fears that drive those with OCD to perform compulsions, that torment them. The anguish that those with OCD feel varies but it can be so bad that it has the potential to totally disable them. And while we can educate people about obsessions and even give them lists of common ones, you still can’t see them. If you have a loved one with OCD or are a professional who works with people who have OCD, then you have likely witnessed the devastating effects of the disorder. The general public has not, as those with OCD are adept at hiding their pain.

As we continue to advocate for OCD awareness, I think it’s our responsibility to differentiate between what OCD really is as opposed to what most people think it is. Only then can we hope to enlighten others who might then think twice about saying “I’m so OCD.“

OCD and Flooding

This post first appeared on my blog in December 2013….

Until recently I had never heard the term “flooding” in reference to obsessive-compulsive disorder, but over the past couple of months I’ve connected with three parents of children with OCD who have dealt with this technique.

For those of you who aren’t familiar with flooding as it relates to OCD, it involves the use of exposure and response prevention (ERP) therapy. But instead of those with OCD creating a hierarchy and then working with their therapists to determine which exposures should be tackled first (also known as graduated exposures), they are “flooded” with the exposures that cause them the most fear and anxiety – the ones at the top of their hierarchy. As with any exposure, they need to remain in the situation, refraining from compulsions, until the anxiety subsides. To clarify the difference between flooding and graduated exposures, the analogy of going for a swim is often used. If you jump right into the icy cold water, you feel the shock of the cold, though you will eventually acclimate. This is comparable to flooding. Entering the water slowly, perhaps dipping your toes first and then dabbing your arms, is similar to a graduated exposure. There is less shock to the body and it is likely more tolerable.

Back to the parents I mentioned. In each case, their young adult children experienced flooding while attending residential treatment programs for OCD. None of the parents felt it was helpful, and at least two are convinced this treatment backfired, and their children regressed. This is not surprising to me. Whereas graduated exposures afford those with OCD a measure of control over their treatment, flooding does not. And exposing someone with OCD to their worst fears immediately? At the risk of sounding melodramatic, I think it borders on being inhumane.

So why was flooding used in these cases? As far as I know, the only reason is that because health insurance coverage limited the length of time their children could stay in the program, there was only enough time to use flooding, not graduated exposures.

There is so much wrong with this picture. Unless I am missing something, flooding does not appear to be in the best interest of those with OCD who have bravely reached out for proper treatment. And certainly not being allotted enough time by insurance companies to get the help they deserve is also not in the best interests of anyone – except the insurance companies. Frustrating to say the least. We still have so much work to do in the fight against OCD.

OCD and the Teenage Brain

by patrisyu freedigitalphotos.net

 

This post first appeared on my blog in December 2013……

“But he’s only nineteen. His frontal lobe development won’t even be complete until he’s twenty-four. Of course he needs your guidance with this decision.” These are the words spoken by my son Dan’s therapist when we sought his advice. Dan had decided to leave college so he could stay “as long as possible” at the residential treatment program he was attending. Thankfully we did intervene, and Dan returned to college after a nine week stay in the program.

This was the first time I realized there is a biological reason why teens and young adults think and act the way they do, often exasperating their parents. In this easy-to-understand article, the author (who happens to be a pediatric neurologist as well as a mom) explains that the frontal lobes, the part of the brain that says: “Is this a good idea? What is the consequence of this action?” are not fully connected in teens and young adults. My guess is anyone who has parented a teenager is now nodding his or her head in agreement.

So what does this mean for teens and young adults with obsessive-compulsive disorder? Well, not only are these young people battling OCD, they are also dealing with their not yet completely developed brains. Both of these factors often involve a lack of good judgment as well as the inability to make good decisions. A double whammy. And for parents and other loved ones of teens suffering from OCD, it can also be doubly challenging. In Dan’s case, we were fortunate he was never an antagonistic teen, but I still often found myself shaking my head in disbelief: “What was he thinking?” Was it his OCD or his age that caused him to think and act a certain way? Who knows?

Decision making and impaired judgment are not the only deficits in a “young” brain. I’ve  written about how teens experience more difficulty in overcoming fear than adults and children and how this can affect their OCD, as well as their treatment success. Of course, if OCD is present and diagnosed in childhood, treatment early on can help ease the chaos of the teen years.

I don’t have much advice, but I do find it somewhat comforting that not everything can be blamed on OCD when dealing with teens and young adults with the disorder. Some of their baffling behavior should diminish with age.  And the rest? Exposure and response prevention (ERP) therapy should do the trick.

Where’s Dan?

by master isolated images freedigitalphotos.net

I have been fortunate to share the story of my son Dan’s recovery from severe OCD with so many people. The fact that he is doing so well is concrete evidence that obsessive-compulsive disorder, no matter how severe, is indeed treatable, and it is gratifying to know that those who are suffering have found hope through our story.

When I connect with those who have either read about Dan’s journey or heard me speak about him the first question they often ask is “How is Dan now?”

I am so incredibly thankful that the answer continues to be, “He is doing very well.”

The next question is usually something such as, “Where is he? How come we never see him at these conferences/meetings/or other OCD events?”

Some time ago I wrote a post discussing whether “OCD advocacy” should be a responsibility of those who have recovered from severe OCD. Better than my post, I believe, are the comments from those who pointed out that advocacy comes in many ways, shapes, and forms. By continuing to do well, keeping his OCD at bay, and living his life to the fullest, Dan is giving hope to all those who suffer from OCD.

Maybe my son’s choice to not focus on his OCD any more than he needs to is one of the reasons he has learned to cope so well. As I have heard many people with  OCD say, “OCD is something I have, not something I am.” Dan has made a conscious effort to put his OCD on the back burner and focus wholeheartedly on living his life to the fullest. He has fought his way back from the brink of despair, and perhaps this fact fuels his resolve to leave OCD out of his life as much as he can.

But I’m not fooling myself. I know at some point Dan might not have a choice. While he might go years with mild obsessive-compulsive disorder, there’s still a chance it could flare up, at any time, with a vengeance. It could overtake him again. The bottom line is I don’t know what the future holds, and neither does Dan. Uncertainty. The word that those with OCD (and many of us without the disorder) hate. Nobody knows what will be.

For now, however, I will revel in the fact that Dan is doing well. I will continue to advocate for OCD awareness and proper treatment, and I will respect his decision to not want to make OCD a focal point of his life. Because after all, isn’t that the whole idea?