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CBT suggestions for an OCD issue


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My 9 yo son's had PANS for 3+ years but only dx about 2 months ago and 30 days of abx haven't touched a thing, just to provide some background.

He's had a contamination tic for about 14 months where anything that's been touched by a girl is contaminated, and paradoxically, he has the compulsion to touch (ie poke/hit) his 6 yo sister *every* time he goes by her.

This HAS to change. It's affecting my daughter on so many levels and for so long, we let it go as "it's a tic and he can't help it". She's very wise, an old soul, but even the most patient person can only be patient for so long before it blows. It's blowing.

My son is on board and understands (as well as he can) how *he* would feel, if every time I saw him, I hit him. He is open to suggestions on how to change this. I told him I'd come here to ask, while he and I also try to come up with something. Thanks.

Edited by jph
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Need more info? what is his history...what led to the Pandas diagnosis and recent 30 day abx? It took about 30 days for my ds to respond, but he was diagnosed within 30 days of onset of Pandas. If it has been 3 years, it could take longer for inflammation to subside. At this point, I would go to a steroid burst....

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I know it will sound like splitting hairs, but the compulsion you describe sounds more like OCD than a tic. I tend to see a tic in the same category as the urge to yawn. you can suppress it for a time, but you don't feel better until you give in and yawn. Although you can "control" it, it's a "physical" need as well as an emotional one. An OCD compulsion on the other hand, feels, to me, more mental and far less phsyical, like "I really, really like having my rug freshly vacuumed, with the nice vacuum lines and no dog hair. It will cause me mental distress to see footprints and dog hair, but not physical distress. The reason I make this distinction is that I wouldn't put the urge to poke someone into a category of "he can't control it". That's not fair to your daughter.


I think you recognize that but I emphasize it, because I think that your first step is to offer your son some CBT tools, but then in fairness to your daughter, be prepared to put consequences in place if he doesn't use those tools. Physical acts on another person cannot be put into the category of "he can't control it." He needs to make a choice - give in to the OCD compulsion and suffer the punishment for violating his sister or tell OCD "no". Normally, I would never tell someone to punish a child for giving into OCD, but when it intrudes on another person's body, a line has to be drawn. Your daughter has rights and needs too. The disease cannot supersede all else. She needs to know she comes first sometimes and this would be one of those times in my book.


So - tools. If you haven't read "What to Do When Your Brain Gets Stuck" by Dawn Heubner or "Talking Back to OCD" by John March, get those two books. Very, very helpful. Heubner outlines the CBT/ERP options -

1. Do the Opposite

2. Delay the act

3. Walk away

4. give OCD a limit

5. change the ritual

6. Make it funny


#2 and 4 don't seem appropriate in your case. It can't be ok to only poke your sister 3 times instead of 5. Or delay the urge but still give in to it eventually. So focus on #1 and #5. When he walks past his sister and has the compulsion to poke her, he needs to instead poke himself. Or snap his fingers. Or stomp his foot. He needs to replace the poking compulsion with a different action that doesn't involve your daughter's body or personal space or belongings. Next, whatever he replaces it with needs to change often, or the new ritual will take hold. He needs to constantly catch the OCD thought and make a choice that he isn't going to let it be the boss. He can give in for the moment, but then within a few days, he'll need to say "today we snap fingers, not stomp. I get to decide, not OCD". Over time, by exercising his own voice over OCD, the OCD voice gets weaker.


This is where I found Talking Back to OCD very helpful, because it clearly puts responsibility for talking back to OCD onto the child not the parent. Only your son can control his actions. And therefore, if he chooses - and it is a choice - if he chooses to submit to OCD instead of fighting back (and it is REALLY hard - don't get me wrong) - then as a parent, you need to protect your daughter's rights and have consequences. You're not punishing him for having OCD or even having to succumb to a compulsion. I get that sometimes, it's just impossible to not give in to the OCD. BUT - he needs to understand he has control over his body and when an OCD compulsion pops into his head, he has control over how he manages that compulsion. He can switch the need to poke into an action of tapping his foot or snapping his fingers.


I'm not explaining myself well and hopefully others who've been to Rothman can offer better ideas. But I found that my own mind frame needed to change and the two books I mentioned helped me do that. For the sanity of your daughter, you and your son need to see him not as a victim (he can't help it) and see him instead as someone who can become empowered and fight back. Pans requires proper medical treatment to make the OCD go away, but ERP tools should still be used to keep that "victim" mindset from allowing OCD to rule the roost.


You can also make it funny (#6). When he passes his sister, tell him to make a funny face (at OCD, not at his sister). Tell him to "do the funky dance" or do some strange series of actions that make hm look like a total goofball. Make OCD the brunt of the joke. Have him mentally say "yes, OCD, I'll move my body like you insist, but I'm going to do it in a way that shows just how ridiculous your silly superstitions really are".


On the medical side, you may need to change antibiotics or add a second one. Sometimes, a combination of two antibiotics is more effective. Many abx are extra-cellular. They work by eroding the outer membrane of the bacteria. A few, like azithromycin, are intra-cellular. They work by getting inside the membrane of the bacteria and destroying it from inside out. Sometimes, using both strategies at the same time, helps a weak immune system stem the tide and gain the upper hand. It's a common strategy in lyme disease because the lyme bacteria can change forms as a defense mechanism and using both extra and intra cellular abx at the same time gives it less defensive strategies. Also continue to swab him for strep or consider a T&A.


Good luck!

Edited by llm
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are you familiar with the social thinking program by Marcia Garcia Winner? you can google it. she has a great line of reasoning with 'expected' and 'unexpected' manners and behaviors. it's very good and quite easy for kids to grasp. it is less of a 'good/bad' or 'right/wrong' scenario and more of we live with 'expectations' of others. when someone steps over those lines, there are consequences. it may be helpful in getting him to buy into why he should work on the things that llm has outlined. he may be so involved in his own compulsion/obsession that he has trouble seeing why everyone may be so concerned/bothered.


along the lines of if you jumped up on the table on day at breakfast and started screaming. that's unexpected. there is actually a lesson where you do something like that. the kids quickly get it because they feel it -- it's odd. that's what everyone else feels when he pokes. so -- just as he would have bizarre feelings towards you -- others have bizarre feelings toward him.

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