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Is this OCD?


scossio
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I feel like I just want to crawl into a hole and hide from my son sometimes. We don't have our first appt with Dr. B until Feb 8th, and if it turns out to be PANDAS (which my pediatrician is certain it is), we have been going through this for almost 3 and 1/2 years now. He has some behaviors that I can see are OCD/anxiety, but the most difficult behavior that we deal with from the second he wakes up on weekends, or the minute he gets off the school bus is his constant hounding to play with someone. There is no other way to explain it other than it is a total obsession...no one can distract him from the the thought of it or engage him in an activity to get his mind off of it. He will beg, plead, demand, scream, threaten, do what ever, until I let him call every single child that he has a phone # for. He calls these families over and over...if they don't answer, he keeps calling. If the machine picks up, he leaves a message, BUT keeps calling. Even if he speaks to a child or their parent, and they say today is not a good day, he will try and call back again later. It is so humilating for me! 9 out of 10 times he ends up with no one to play with, and then I have to deal with the temper tantrum, like its my fault. I try so hard to take him places to kill time during the day...movies, bowling, lunch, but the second we get back he is running for the phone (and the entire time we are there he keeps asking "can I call someone when we get home?".) And when he does get to play with a friend and that friend has to leave after a few hours, he starts the whole thing over again about trying to call someone else! I have 2 other children who absolutely do not do this, plus I am a teacher and I have never seen/heard of this in other kids. He beggs other children's parents right in front of me to play with them even when they say not today, he still continues to beg, and he can then even get nasty with them. I am so absolutely embaressed, and really don't know what to do. Talking to him does NOTHING. No matter what I say, he absolutely does not listen to me and continues on with this behavior. Most of the kids are turned off by him by now, and my other 2 kids call him a "stalker". Does anyone here think this could be an OCD behavior? Its not one that you read about in the books, thats for sure, and I am at a total loss as to how to deal with it. I absolutely dread the weekends because of this, its just all too consuming! I would appreciate ANY thoughts and advice.

Thanks so much!

Stephanie

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It certainly sounds like OCD. Addressing the behavior (compulsion) alone will probably not get you very far. He needs coaching to help him address/face the obsession component - the fear that drives this incessant behavior despite negative results. If you watch the shows like Hoarding on A&E, hoarding is one of the sub-types of OCD, along with fear of contamination, need for symmetry/counting, need to check and re-check, scrupulosity (religious or morality issues), and intrusive thoughts (e.g. fear of harming self or others). Many of the victims on some level realize their behaviors are having negative consequences, but the fear of NOT giving in to the compulsion is far greater, so they keep giving in.

 

In your son's case, there may be a huge, albeit unfounded, fear that if he doesn't play with a friend, that friend will suffer a horrible fate - that he must "watch over" that friend to prevent a horrible accident. Or maybe if he's not with a friend, something horrible will happen to your son - that the friends somehow keep the evil away. So maybe he knows he's driving people away, but his need to be "protected" by a companion is far too great, so the consequences seem insignificant compared to the consequences of NOT having a playmate with him (like a see-saw with "turning my friends off" on one side and "dying if I don't have a playmate" on the other end). Whatever his fear, it may seem ridiculous to YOU, but it is very very real to him. And even if he can see a glimmer of its irrationality, the risk of telling OCD "no" is far too great.

 

So you need to get to the root of his fear and then work on ways to get him to face up to that fear so he can stop being ruled by it. This is no easy task. Often, verbalizing the fear might feel like you'll make OCD so mad that it (the OCD monster) will make horrible things happen if you reveal the secret. OCD is literally like a kidnapper who has taken your child hostage and is telling him that he (OCD) will kill him if he cries out for help. For PANS kids, medical treatment can help greatly diminish the fears and bring the anxiety down to a level where you can work on this. But in the meantime, I'd work on giving your family the vocabulary to work on ERP therapy.

 

I'd start with What To Do When Your Brain Gets Stuck for your son and Talking Back to OCD for you. You might also look for a therapist trained specifically in ERP (exposure/ritual prevention). You can find a list of therapists in your area at www.ocfoundation.org - look for those with BTTI training - this is the course offered by the OC Foundation on how to do ERP.

 

The thing about OCD is that you can't just say "don't do it." You need to extinguish the fear that's driving the behavior. A very hard task, but not impossible. As I said, medical treatment makes this much easier. But your best strategy is a combination of medical and ERP therapy to make sure you aren't left with residual/learned behaviors. ERP gives excellent tools to cope with anxiety for your entire life, well past this current crisis. Can't recommend it enough.

Edited by LLM
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It certainly sounds like OCD. Addressing the behavior (compulsion) alone will probably not get you very far. He needs coaching to help him address/face the obsession component - the fear that drives this incessant behavior despite negative results. If you watch the shows like Hoarding on A&E, hoarding is one of the sub-types of OCD, along with fear of contamination, need for symmetry/counting, need to check and re-check, scrupulosity (religious or morality issues), and intrusive thoughts (e.g. fear of harming self or others). Many of the victims on some level realize their behaviors are having negative consequences, but the fear of NOT giving in to the compulsion is far greater, so they keep giving in.

 

In your son's case, there may be a huge, albeit unfounded, fear that if he doesn't play with a friend, that friend will suffer a horrible fate - that he must "watch over" that friend to prevent a horrible accident. Or maybe if he's not with a friend, something horrible will happen to your son - that the friends somehow keep the evil away. So maybe he knows he's driving people away, but his need to be "protected" by a companion is far too great, so the consequences seem insignificant compared to the consequences of NOT having a playmate with him (like a see-saw with "turning my friends off" on one side and "dying if I don't have a playmate" on the other end). Whatever his fear, it may seem ridiculous to YOU, but it is very very real to him. And even if he can see a glimmer of its irrationality, the risk of telling OCD "no" is far too great.

 

So you need to get to the root of his fear and then work on ways to get him to face up to that fear so he can stop being ruled by it. This is no easy task. Often, verbalizing the fear might feel like you'll make OCD so mad that it (the OCD monster) will make horrible things happen if you reveal the secret. OCD is literally like a kidnapper who has taken your child hostage and is telling him that he (OCD) will kill him if he cries out for help. For PANS kids, medical treatment can help greatly diminish the fears and bring the anxiety down to a level where you can work on this. But in the meantime, I'd work on giving your family the vocabulary to work on ERP therapy.

 

I'd start with What To Do When Your Brain Gets Stuck for your son and Talking Back to OCD for you. You might also look for a therapist trained specifically in ERP (exposure/ritual prevention). You can find a list of therapists in your area at www.ocfoundation.org - look for those with BTTI training - this is the course offered by the OC Foundation on how to do ERP.

 

The thing about OCD is that you can't just say "don't do it." You need to extinguish the fear that's driving the behavior. A very hard task, but not impossible. As I said, medical treatment makes this much easier. But your best strategy is a combination of medical and ERP therapy to make sure you aren't left with residual/learned behaviors. ERP gives excellent tools to cope with anxiety for your entire life, well past this current crisis. Can't recommend it enough.

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thank you so much for your response, it was very helpful. I was trying to figure out if this was another form of his seperation anxiety...the desperate need the be with a friend, but what you said makes a little more sense. There is certainly an obsessive and compulsive act in what he is doing, I just can not figure out how it started and why it is so different from the typical OCD behaviors seen in children. I will look at the web site you mentioned for therapists trained to deal with this type of behavior. As much as I KNOW he can not stop what he is doing and it must feel a thousand times worse for him, it really is so difficult to deal with and I feel like I am at my witts end. Thanks again for your help.

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