hide the compulsions?

[ibcdbwc]

Thanks for all the other replies. I had and email consult with Dr. K and he believes it is “rather likely” that my son has PANDAS—given the length of time between episodes (which I guess are exacerbations) and the association with strep in the family. We are starting more bloodwork including IG panel…and will follow up via phone with him. So we are on our way…He believes our first issues was at age 5. My son is 10 now. If this all turns out be true, I'll be kicking myself to have not uncovered this for 5 years!

Interestingly he said that NC has the highest incidence of PANDAS. WHY????? On to my question:

 

Can your PANDAS children hide their compulsions? At home, my son will be touching and tapping all over the place when he has an exacerbation.

“Just right” OCD. Or another possible variant--- very hyper and out of control.

 

When he’s with his peers he still with do the touching and tapping—but he tries to disguise and hide the compulsions from his friends and while at school. He’s fairly effective. I notice the “touching” but that is because I’m watching him very closely. For example if he “needs” to touch something a few times with his feet. He will pretend to bend down and look at something—allowing him the extra time to touch his feet until it “feels right.” If he has to turn his head, “he will do so slowly” as if to really be looking at something. With the hyperactivity exacerbation, he is less likely to run full tilt crazy as he does at home—but it manifests itself in incessant talking or aggressiveness. (his peers do notice this).

 

When it’s not a clear exacerbation and he is just baseline/borderline somewhat impulsive or hyper at home—he is able to completely change when a neighbor comes over.

[MomWithOCDSon]

Can your PANDAS children hide their compulsions?

 

Absolutely! That's one of the reasons why, I think, some of our kids get mislabeled as "behavior problems" because they are able to overcome some behaviors part of the time, and others other times. So the parents and the school find themselves thinking, "Well then, if he can control his behavior in this instance, why can't he control it in that instance?" Or, "If he was in control of himself yesterday, why is today such a struggle? He must be doing this purposefully!"

 

My son's case worker at school gave us a great analogy: It's like a glass of water. All day long, every time your DS has an impulse to perform a ritual or act on a compulsion, he has to try and squelch it or hide it for the sake of not calling unwanted attention to himself in front of his peers. The impulse to "be normal" is almost stronger than the impulse to follow through with the compulsion. But each time he presses down on the anxiety in order to "hide" or forego his compulsion, another few drops of water get added to the glass. By the end of the school day, depending on his triggers and his overall state of health, his glass may have reached the topping-over point, in which case, once he gets home (or maybe even into the car, for the ride home from school), the "water" comes spilling over the sides of the glass, and the family ends up getting soaked while the school was spared the flood. The same could explain why he can hold it together or "corner off" some of the behavior when a neighbor visits, or when he goes to Grandma's house for the afternoon.

 

Plus, Home is supposed to be where it's safe, where you can let your hair down. So even if his glass hasn't reached the overflow point yet, he might be more inclined to let his compulsions overtake him more there, and in front of immediate family members, than he is in front of peers or other less-close adults.

 

Doesn't make the compulsions or the behavior any less real or in need of being addressed, though. Unattended, especially when it comes to OCD rituals and compulsions, they can grow and start to convince the kid that they are more important than even peer acceptance, and then you're on a whole 'nother playing field!