Postpartum Health

Obsessive-Compulsive Disorder

Gerald Nestadt, professor of psychiatry at the Johns Hopkins Medical Institutions, was online Thursday, March 9, at 11 a.m. ET to field questions and comments about postpartum obsessive-compulsive disorder (OCD).

Some women develop clinically significant symptoms of OCD during pregnancy or the postpartum period -- a phenomenon that is vastly under-recognized, experts say.

More From Tuesday's article Scary Thoughts:

"While reliable statistics on postpartum OCD are lacking, the lifetime incidence of OCD in the general population is believed to be 2 to 3 percent. What distinguishes OCD symptoms from normal intrusive thoughts is partly the extent to which these ideas are anxiety provoking, irrepressible and persistent."

Gerald Nestadt is a professor in the department of Psychiatry and Behavioral Sciences in the Johns Hopkins Medical School and professor of Mental Health in the Bloomberg School of Public Health at Johns Hopkins. He is active in research, clinical treatment, and education in Obsessive Compulsive Disorder. His research, funded by the NIMH, involves investigating the genetic etiology of obsessive compulsive disorder. He is the director of the Johns Hopkins OCD clinic, and teaches residents and students about this disorder.

Nestadt received his medical degree from the University of Witwatersrand in Johannesburg, South Africa and a degree in Public Health at the Johns Hopkins University. He completed his psychiatric residency training at Johns Hopkins and a psychiatric epidemiology fellowship at that same institution. He has been on the faculty at Johns Hopkins for the past 23 years. In addition to studying OCD, he is involved in epidemiological research studying personality in the general population and the genetics of schizophrenia and bipolar disorder.

The Transcript follows.

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Gerald Nestadt: Welcome to this q & a meeting. I am pleased that you took the time to enter the discussion. I hope that you find this useful. I find it important to discuss OCD openly because many people feel ashamed and scared, yet treatment is available and can be very helpful.

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Chicago, Ill.: My four-year-old son is showing signs of OCD. He has been doing some form of "pattern running" (setting up a collection of objects in a particular order and running back and forth staring out the corner of his eye) every day for a couple of years. He obsesses over certain numbers and shapes. And recently, after a brief illness, started obsessively hand washing. (This one has abated somewhat.)

Is there any treatment available for children with OCD other than drugs? We are concerned with the long term affects of a drug regimen on someone so young.

Thank you.

Gerald Nestadt: This may well be incipient OCD, but it could also be normal developmental behaviors. Behavioral therapy is difficult for children, but advice may be very useful to you. Please note that occasionally OCD can emerge after a strep infection, though this is very rare

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College Park, Md.: Are these women women who had difficulty conceiving and once they did they became so elated that that elation could not be sustained after the baby's birth. And so they had doubts about being a mother?

Gerald Nestadt: There is no evidence that these women had difficulty conceiving.

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Gaithersburg, Md.: Reading the Scary Thoughts story in Tuesday's Post took the weight of the world off my shoulders! I am a new mom and have had occasional intrusive thoughts and, just as the article says, I never voiced them to anyone. Not my husband, closest friends, or siblings. For me, the intrusive thoughts happen when I am very tired - up nursing at night, trying to get the little one to go to sleep, etc. One night my baby was fighting sleep and I said to him "It's okay, you can sleep. Don't fight it," and I immediately had a horrible thought that I'd say the same thing if he were dying. I couldn't - and still can't - believe that thought even entered my mind, and I still get chills thinking about it. Is something like this also considered an intrusive thought, or is this something else? In any case, is that a normal thought for a new mother? Finally, why aren't more doctors (OB/GYNs, pediatricians, etc.) talking about this? My pediatrician did a couple of PPD screenings shortly after the birth of my son, but never asked about intrusive thoughts. The failure to talk about it may promote the feeling that it is wrong, abnormal, etc.

Gerald Nestadt: I am so glad that this was a relief to you. It is normal to have a rare thought. It only is a problem if they are persistent and interfere with you.

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Baltimore, Md.: Can pre-existing depression in a woman be an indicator for developing post-partum OCD?

Gerald Nestadt: Often OCD symptoms emerge in the context of depression; but it is not known to be an important risk factor.

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Colorado Springs, Colo.: At what point does one become concerned when having the obsessive thoughts? Regarding Andrea Yates, perhaps did she start with obsessive thoughts as described as OCD but then progressed to psychosis after years of having children and not seeking help? Or do you think she presented with psychosis? It concerns me for people to think obsessive thoughts are "normal", as believed of mothers checking their children repeatedly during the night to see if they're still breathing, in postpartum that they won't seek help. When is the line crossed?

Gerald Nestadt: OCD does NOT go onto psychosis. I cannot comment about Yates as without knowing the case in detail I would be wrong.

The line is crossed when these interfere with your functioning, causes distress.

Let me explain further, an obsession is an intrusive thought that you DO NOT want and you have difficulty resisting. The obsession is when having the actual thought disturbs you. Often we worry about things too much, and that can be burdensome; and may even require support. But this is not OCD.

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Colorado Springs, Colo.: I had my baby a year and a half ago. Since then I seem to have gotten worse with my OCD and it has not gotten better. Things like obsessive thoughts and an increased need for "evenness" - if someone touches me on the right arm, I ask them to touch me on the left arm ... things like that. I have not had any "bad, hurtful" thoughts toward the baby. It just seems that my weird behavior has increased in intensity. I have never been seen for this as my job will not allow mental disorders of any kind. Can Postpartum OCD continue forever?

Gerald Nestadt: OCD is most often life-long; with a mean age at onset of 12 years.

Most commonly the post-partum or within pregnancy OCD, that we are talking about is an exacerbation of this preexisting OCD, if it is mild and even sub-clinical.

Sometimes the post-partum onset can persist, but then it's best conceiving this as just OCD. Treatment can be very helpful. The treatments are behavioral therapy and/or medications.

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Washington, D.C.: Exactly how common is postpartum OCD? Does it go undiagnosed in cases? It seems like it could be confusing for the women experiencing the intrusive thoughts -- do you find women are ashamed to admit they're having these thoughts?

Gerald Nestadt: The article by Abromawitz talks about the frequency in their survey. It is NOT very common, ie NOT to a disabling point.

OCD occurs at about 2-3% in the general population.

It very often goes undiagnosed; at least half the people with OCD do not get treatment. People with OCD are the most secretive because they think they are "crazy"; they are NOT, but they often avoid talking about this or getting treatment.

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Arlington, Va.: What do you recommend to women having intrusive thoughts? What's the treatment like for this form of OCD and how long can it/does it typically last?

Gerald Nestadt: The first thing is to get a good evaluation to be sure it's OCD; probably the best is behavioral therapy, usually a course should be 3 months with weekly sessions. Treatment with medications is also very helpful. Though often these medications will be needed for a while.

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Virginia: How many forms of OCD are there? Is OCD, generally speaking, a common disorder? Are there varying degrees of it?

Gerald Nestadt: OCD occurs in 2-3% of the population. It is probably several related forms, but we have not established this exactly as yet.

Severity can range from the exceptionally mild, that it's hardly bothersome, and is merely a bother; To the extreme cases that leave people totally dysfunctional; eg not able to leave the house. Not able to work, etc.

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Anonymous: Thank you so much for writing this article. I think I had PP depression and OCD with both of my children. After my first child was born, I felt so sad that I was no longer pregnant, that I wanted to be pregnant again. After my second child was born (10 months later) I was so afraid that something terrible was going to happen. I had similar visions mentioned in your article. I would get so upset, that I would start crying even before I could reach my children to make sure that they were ok. I always thought that PP Depression was about being depressed all the time, and wanting something horrible to happen to the child - or worst, wanting to harm the child. This wasn't how I felt. I thought that I was just over-protective and emotional. Looking back, I wish I knew that I had this. Maybe getting help would have made those times a little easier.

Gerald Nestadt: It does seem like you had obsessions. I am glad they don't bother you now.

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Colorado Springs, Colo.: So, are you saying that people having these obsessive thoughts are not in danger of acting on them?

Gerald Nestadt: It is very rare that people with OCD act on their thoughts ... it's the ridiculous fear that they will act on them. It often even is the doubt that they may even have acted on them, when they certainly did not

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Washington, D.C.: You mentioned taking courses for treatment. What do these "courses" involve -- are they like therapy sessions? Thanks for explaining.

Gerald Nestadt: Behavior therapy is based on the principle that it's what you do in response to the thought that keeps the thought going; just like fuel to the fire. If one can stop the behavioral response then the theory is the thoughts will go away; AND THEY DO!

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Alexandria, Va.: When women with these problems act on their thoughts and harm their children, do you think that it is at all useful to criminalize their actions? It seems like a form of insanity yet Andrea Yates, Mine Ener (Villanova professor who killed her baby and then herself), and others no doubt don't seem to be in control of their faculties. What good does it do to throw them in the slammer?

Gerald Nestadt: These are not cases of OCD.

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Washington, D.C.: What do you consider the main differences between OCD and post-partum OCD?

Gerald Nestadt: I actually only believe the difference is the timing ... ie it occurs in the post-partum period. I believe this is a common time for onset; just like puberty.

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Mid-Missouri: Can a person have these intrusive thoughts before pregnancy or during pregnancy, and have them worsen postpartum? Reading the article, the problem seemed to be not having the thoughts, but being overly distracted or acting on those thoughts. Is that accurate?In other words, should I be concerned about intrusive thoughts only if I feel compelled to act on them or I feel too anxious about them?

Gerald Nestadt: These thoughts can occur any time. Yes it's not the thoughts but your response to them that causes the problem. One becomes afraid that something bad will happen, even when deep down one knows it won't, but one cannot reassure oneself.

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Washington, D.C.: Ever since I had my baby - now a toddler - I have been more and more anxious about germs and having him catch something. I pretty much walk around nervous all day and am so scared he will get sick or something bad will happen to him. I have been diagnosed with OCD (checking) a few years before I had a baby but that got better though it seems to have transferred to being so anxious about germs and him getting hurt (falling, etc). I had actually made an appt. to see someone about an hour before I saw the article. I plan to bring it with me to the appointment.

Gerald Nestadt: That's correct; glad you are getting treatment.

The actual symptoms change over time; ie one may check excessively at one time and wash ones hands excessively at a later time in the course of the disorder.

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Baltimore, Md.: Is there any connection between postpartum OCD and the amount of involvement by others in caring for the baby? It seems that now new mothers are solely responsible for caring for their children, rather than having a group of relatives or neighbors participating, which can be rather isolating. Does that appear to have any effect on the prevalence or intensity of symptoms?

Gerald Nestadt: It may; stress is clearly related to its origin and to its exacerbations. We know very little about the environmental causes; but do know that there is a genetic component. This is the area that I study.

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Washington, D.C.: It seems as though what is commonly referred to as PPD lumps together both PPD and PPOCD. Do you think that's the case, because PPOCD hasn't really been talked about? Do you think more women can be helped if their doctor can look for PPOCD symptoms separate from PPD and thus prescribe a different course of treatment?

Gerald Nestadt: It's interesting.

And requires careful evaluation because: depression can have obsessions during its course. AND OCD is often associated with depression. The only way to distinguish is based on the longitudinal course; ie people with depression have episodes of depression and ONLY during these episodes will OCD symptoms emerge. Whereas people with OCD have obsessions and compulsions over their life at varying degrees of severity, and intermittently get depressed. Hope this is not too confusing.

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Anonymous: I think I've had OCD since about age 12. But I can go months without any intrusive thoughts or compulsive actions, even years, but when I read an article like this or think about it, the compulsions come back. (Simple things like rubbing my fingers together. It seems so stupid!)

I suspect I'd be on the mild side, but when I do have episodes, and they will last for weeks when I get them, it really bothers me. I'd like to think that no one notices, but I remember a kid in school mentioning that I always did this rubbing. THAT was what bothered me the most.

Gerald Nestadt: Yes, embarrassment is a major fear.

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Washington, D.C.: I've had some trouble with depression in the past and so I know I will have to take care of myself and keep an eye on myself when I eventually get pregnant (I'm 23 right now). In high school, I saw a social worker who said I had some symptoms of OCD but wouldn't definitively diagnose me (which I am fine with). I'm a little better now, but before I'd have all these thoughts about me not being good enough, me being fat, not smart enough, not deserving of things, etc. I'd know they weren't true, and I'd hate the mood those thoughts would put me in. Logically I know they're not true, but the physicals response to those thoughts and the thoughts themselves I had no control over. This still pops up at times. My question is, what are these symptoms similar to? On one hand, it seems like a touch of depression, i.e. being in such a low state of mind that I can't see things for how they actually are. But in terms of the thoughts, it's like I actively try to convince myself otherwise, actively try to remove them because I know they're not true; that seems like OCD-type symptoms, but I have few compulsive behaviors (besides little things, none of which impede my life). I'm not looking for a diagnosis, because I am doing well at the moment ... just insight.

Gerald Nestadt: The negative ruminations of depression ... are based on poor self attitude ... you believe you are not good. Obsessions are more thoughts you cannot help, and recognize, at least deep down, are "silly" or not true.

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Washington, D.C.: Thanks for doing this chat -- I've done research on postpartum depression and I think it's incredibly important to bring these sorts of issues into the public awareness.

However, I think that you may have been too dismissive of Chicago's concerns about her 4-year-old son who is exhibiting what seems to be clear-cut PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) - especially since the hand-washing began after a brief illness. I would encourage her to bring this up with her son's doctor, and to specifically mention her concern about PANDAS. Thank you.

Gerald Nestadt: Thanks.

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Washington, D.C.: Thank you for this informative article. I'd like to share that I suffered from intrusive thoughts since about age 9, but was only diagnosed with OCD at 30, by my primary care physician. Therapists had mistaken my symptoms for 'generalized anxiety disorder' and I thought I was a bit crazy.

The point of my letter is to let readers know that I started on Celexa six years ago and my life has completely changed. It has quieted the never-ended looping tape in my head and I highly, highly recommend it.

washingtonpost.com: Scary Thoughts (Post, March 7)

Gerald Nestadt: Thanks for sharing this ... Help is possible ... it's not worth suffering because of stigma.

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Cincinnati, Ohio: The article addresses post-partum women having obsessive thoughts specifically regarding their infant. But is there any information on childbirth bringing about obsessive thoughts about things not related to the newborn, such as thinking the police are following you? Would such symptoms during the post-partum period fall under the same diagnosis as if they were specifically about the infant? Thanks.

Gerald Nestadt: An obsession is not defined by its content, either in the PP period or at any other time. It's the form of the thought; ie intrusive, unwanted, and neigh impossible to resist. So yes it could be about the police. It's just that new mothers are mostly thinking about their newborn.

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Washington, D.C.: Statistically speaking, how often does postpartum OCD turn into something more severe, meaning the parent would actually act on the fears? Thanks.

Gerald Nestadt: Hardly ever if at all. Remember the obsession is a fear that something will happen if I don't do such and such OR it's a concern that I've done something. It is essentially "doubt"; it was called the "doubting disease" by Janet a French psychiatrist in the 1800s.

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Washington, D.C.: Can you describe one of the worst cases of this you've seen or heard about and what happened?

Gerald Nestadt: There are many severe cases; and at some point they are terrible for the person at any level. However, one young man remains in my mind. If he left his home, he would have so many rituals that he had to perform to get back in that often he could not return, and would sleep in his car or on the street. Worse, he would get overwhelmed with a thought or with obsessing about an object he saw, that he would stop in place on the street. As a consequence of this standing paralyzed in place he got mugged several times.

The worst thing was that he was unwilling to get treatment and reported that he did not like medication. So he remains in this state after several years, as ill as before and in no treatment. His aging parents touch base with me every few years and we can only commiserate.

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Arlington, Va.: So, then, how is the "doubting disease" debilitating or harmful if it is essentially doubt?

Gerald Nestadt: If you don't know whether you poisoned your child (even though to others it's absurd) ; or if you don't know whether you hit a pedestrian while driving (even though you didn't) and have to go back to that spot on the highway a dozen times to check; or call the police to check whether there was a hit and run event ... it is a problem

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Colorado Springs, Colo.: What is the best way to educate new mothers so they don't get caught in the cycle of OCD when they do have it? My youngest child is 8 now, but I had these thoughts will all three children. My biggest fear was that someone would find out about the thoughts and take the children away so I didn't seek help. This info could have saved me a great deal of turmoil had I known. Thank you for your work.

Gerald Nestadt: I never thought of this. The obvious place is to start with obstetricians. Public education, and discussions like this one.

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Gerald Nestadt: I'd like to thank all of you for coming to this discussion. I hope it was useful. If anyone is interested in learning more about our study please look up OCD at www.hopkinsmedicine.com.

Thanks.

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Bethesda, Md.: I am pregnant right now and have known so for about 8 weeks. I am at 12 weeks. I find myself unable to do any of the things I want to do - journal, keep notes, record feelings and events, because I am afraid something will happen. I have had a hard time even sharing the news with family and friends, for the same reason - every time we tell someone, I think it is going to precipitate a miscarriage. This is making me stressed and even more anxious because now I am mad at myself for not doing the things I wanted to do to record this first, very wanted and very exciting, pregnancy, but still unable to start the process. Does this sound like what you are discussing? What do you recommend that I do to snap out of it, as my husband keeps telling me to do. I know that things most likely will be alright, but there is always that chance, and it nags at me constantly.

Gerald Nestadt: Yes this is what we are talking about. First, nothing bad will happen; this is an irrational fear; but I know it's difficult for you to believe that. You CANNOT just SNAP out of it ... that's unfair to you to think that or be told that. I would seek a psychiatrist and get their opinion. Please do this, you will find it may be a great relief.

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Rockville, Md.: Thanks for your article on OCD. After a family tragedy I have found myself worrying excessively about a family member who has OCD and how she will cope with the tragedy. Though she seems to be doing better, I still often worry excessively. Do people with OCD often experience 'relapses'? Or should I feel positive because she seems to be doing much better?

Gerald Nestadt: They can relapse ... but just as likely may not.

Tragedy does not bring it on.

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Gerald Nestadt: Goodbye.

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washingtonpost.com: This concludes the discussion with Gerald Nestadt. Thank you for your questions.

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