Caught in a Loop

[ibcdbwc]

Hi All,

I have a 16 year old who had done very well for over a year until October of this year. He had a major flare (despite prophylaxis). Came out after 2 weeks and after 1 week re -entered another flare. That lasted 2 more long weeks. He has  again been out a week and we look to be headed back in soon. He's getting more and more nervous as he fears the flare. I should add the flare is awful. The weeks where he is "out of the flare" were still full of more mild anxiety - but he could function and he could think. Helooks sick physically and mentally.

I need help with ERP suggestions because his primary OCD right now is scanning his body to "check" for a myriad of symptoms. He's so tuned in to how he feels before a flare that he's constantly checking and seeking reassurance. I think he might actually throw himself into these flares for lack of a better term,. He has enough physical symptoms (bloating, constipation, flushing, ear popping, joint popping, neck pain, fatigue, hair thinning...) and it all reminds him of the flare and boom - anxiety up-- which then equals another flare.

He has a psych who has been doing some CBT. We have a functional medicine doctor looking into all his gut issues. We have a PANDAS specialist who is recommending IVIG. We will address this later this month.

I just feel like we are in a loop and I don't know how to get out!

 

 

[MomWithOCDSon]

Wow, that's a tough one.  That sort of "thought OCD" is really hard to address, particularly as our kids get older and better at concealing some of the stuff that goes on in their heads.  Chances are, if you adopted a no-tolerance policy and "bumped" him out of that train of thought whenever you caught him doing it, he'd just find ways to conceal it better, leaving you thinking maybe he'd managed to shake it, but instead he's still indulging in it.

If anyone else has ERP suggestions for this, I'd be interested in hearing them.  I will tell you that we were never especially successful with ERP for this sort of pervasive thought OCD, given as the typical ERP tactic would be to somehow expose them to the fear itself.  But how do you expose him to these symptoms that he's so dreading and desensitize him to them when 1) they can be very real, in fact, 2) in the long run, it's probably a good thing that he's sensitive to how he's feeling because it can help him take appropriate steps in the future, and 3) "giving" him, or asking that he pretend that he has, in fact, developed these full-blown symptoms that he fears, I'm not sure will desensitize him to them.  I wonder if maybe some sort of PTSD treatment might not be more applicable here, since it seems that's really a good bit of what's going on?  The perseverating over it is OCD, but the fear itself is very PTSD like, don't you think?

As for him seeking reassurance, my experience with ERP would be that you would be encouraged to withhold that, rather than feeding that monster.  Really tough to do.

FWIW, when my son became a teenager and we felt we'd pretty much exhausted our ERP techniques and strategies, finding them lacking for, especially, pervasive thought OCD, we moved on to ACT, Acceptance and Commitment Therapy.  It basically approaches these intelligent, analytical thinkers with a response that says, that's what you think, but that's just a thought and nothing more than a thought.  And it has no more power than a thought such as "There's an apple on the table" unless you GIVE it more power.  Accept that you have thoughts, both positive and negative, and commit yourself to prioritizing and acting upon those thoughts that are beneficial to the life you want, and accepting those thoughts you have that are generally less constructive, but giving them no additional power.  More nuanced than that, of course, but that's more or less what I carry with me from our ACT experience.  And, in the end, it did help my DS.

Sorry not more help, but hope you find some relief soon!

[ibcdbwc]

Very helpful! Thank you very much for putting into words my exact thoughts. I was not able to articulate the issues at hand and you were! Appreciate your time and all you do to support parents on this board! I think ACT is a very important concept and I will talk to our psych soon about these issues.

[bobh]

I agree with MomWithOCDSon that ERP when in the worst of PANS/PANDAS symptoms not only doesn't work, but is counter-productive.  It certainly has helped some people with OCD, so it might still be helpful when he is not as anxious - but that is not when you need the help the most.

I am also sure that some ERP practioners will disagree with this kind of advice and point to very severe cases that they have helped.  But, they might be different if they don't have the PANS/PANDAS trigger.