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MJL --


So sorry you're going through this; it truly stinks! And being hit with it as a teenager is probably all the harder because his "life before OCD" probably is such a clear, "happy" memory for him.


My DS was dxed with OCD at age 6; we dealt with it off and on for the next 6 years (therapy, medication, periods where It was not intrusive, periods where it was very intrusive) before he was finally diagnosed with PANDAS and we realized that he was harboring strep and reacting to that with OCD behaviors. Once we got the strep and immune response under control, his OCD and anxiety decreased dramatically, but he still tends to "rev at a high RPM" and reaches back to some OCD behaviors and anxiety at times, particularly when he's under atypical pressure.


I don't know if you've looked into PANDAS/PANS at all but if not, it might be worth just ruling it out, at least. Especially as you're now on your second medication trial and it doesn't appear to be effective. That being said, whether your DS's OCD is microbe-driven or not, I know from experience that confronting the behavior set is important . . . and HARD!


How do you help him challenge the OCD while also being supportive? We did our best to separate the OCD from the boy, and to "call out" and express a no tolerance policy for the OCD, as separate and distinguished from the kid. For example, if he quibbled with his glass or silverware at the dinner table because it had "spots" (water spots) on it and insisted that they were dirty and needed to be replaced, we'd tell him those were his glass and silverware for the meal, and he could use them or go without or use his hands, but while we welcomed him to the dinner table, his OCD was uninvited and unwelcome. If he took it a step further and refused to eat because his glass and/or silverware were "dirty," then we'd allow him to get up and replace them himself (no helping hands from us!), but then, in exchange, he had to take care seeing to it that ALL the dirty dishes in the house were cleaned for the next week, or some sort of equal-exchange exposure-related task.


OCD support groups for kids his age? I would contact the International Obsessive Compulsive Foundation (IOCDF) and see what they might have available in your area? And I believe they have an on-line portal for teenagers, as well. I know that they have programming at their annual conventions specifically for teenagers who are dealing with OCD, and sometimes local "chapters" or groups run programs, as well. The IOCDF is a great resource, overall: https://iocdf.org/


What have we learned from treatment? That "tough love," particularly as your kid gets older and is thus more intellectually capable of finding loopholes and/or hiding their obsessions and compulsions, is essential. That a consistent "OCD is unwelcome here" response can eventually get results, but it's not fun when it's in process. That OCD is like kudzu, creeping around looking for fresh vulnerabilities, and you have to keep it pruned back or it will just get stronger and more invasive and consume more of your life. That, while actual exposure exercises can be tough and feel "unnatural," life offers a whole lot of more organic exposure opportunities that can be beneficial, like taking your contamination-wary kid to eat lunch at a mall food court, at a table with crumbs on it from its last occupant, etc.


What tools/techniques have worked best? It has varied, depending upon the behavior and the circumstances, but I really think that consistently and definitively shutting out the OCD, while embracing and encouraging and celebrating your kid and his victories over the OCD, however subtle, has been our best ally. Our DS knows that, if he hits a rough patch, we're there for him and will help him push through. But he also knows that if he caves entirely to an OCD compulsion and allows it to have a palpable impact on his life, that he will be doing it alone and facing the consequences alone. So, for instance, at 15, if he spent so long in the bathroom that he missed a dinner reservation at his favorite restaurant, then we didn't push the reservation back or reschedule it; he had to make a sandwich or heat up a microwave meal for dinner instead. It's really, really hard when they become upset, tearful, full of self recrimination, etc. Then I would wind up feeling like the biggest, baddest mom on the planet, and I'd want to fold. Eventually, though, I learned that, rather than folding in that instance and thus giving him the impression that the OCD could call the shots or control our family dynamic, I could find another opportunity to be warm and fuzzy, buoy his self-confidence, compliment him on an instance in which he pushed back at the OCD all on his own, or "shrunk it" so that it impacted him less than it had the day or week before. Stuff like that.


Is there light at the end of the tunnel? I would certainly say so! It can just be hard to see it sometimes, particularly as you're trying to find something -- the right SSRI, the correct therapist, or even the right diagnosis (PANDAS/PANS) -- to at least help your DS get some leverage over the OCD so that fighting it, shrinking it, is even just a little less difficult than it was the day before. Unfortunately, it is a marathon, rather than a sprint, in most cases. But you can get to the finish line, and so can he.


Hang in there! Wishing you all the best and hoping something I've said has some resonance for you/your situation. Feel free to touch base at any time!



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While drawing a hard line against OCD works, in theory, in reality, if your child is flaring due to Pandas and they are young it is extremely difficult for them to implement any strategies to help themselves. The younger they are the harder it is I have found. So, while that is always my plan and they are young it is extremely difficult for them to implement any strategies to help themselves. The younger they are the harder it is I have found. So, while that is always my plan a A, plan B is giving her anti-OCD and anti-anxiety medication. As soon as the fliers under control the OCD vanishes. This time it was plasmapheresis that knocked it out. Proper treatment of the immune system is the answer here. But, my child is still in elementary school. The damage being done by her crippling OCD when she has it gets better with time and treatment and hopefully, will become a thing of the past. I can't say what I would do if she was in high school. But, if pandas or pants is driving the behaviors you need medical intervention. And, SSRIs and other meds work miracles in the meantime.

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Hi MJL --


"DS" is short for "dear son;" the nomenclature sort of carries throughout, with "DD" standing for dear daughter, "DH" meaning dear husband, etc. Just a little short-hand! ;)


Tough love IS tough! Totally agree! And believe me, I've done my share of folding, too. It can be helpful if you have someone else in the immediate setting (spouse, grandparent, etc.) who maybe plays a little "good cop" to your "bad cop," or vice versa. In our family, I'm fairly consistently the one who's more strict, no-nonsense, so it comes more naturally to me, I guess.


I do think PANDAs/PANs is something for you to look into; there's a host of information in that regard here at ACN. There's a separate forum dedicated to it, in fact. Particularly if your DS's OCD came on suddenly, if he had been sick with strep or a virus in the month or two preceding the first major OCD occurrence, etc.


I think it's probably been easier for us to separate the OCD from the person because our son was diagnosed with it quite young. And, at his first therapy appointment (which we attended), the therapist encouraged him to draw a picture of his OCD and give it a name (Odie). So, from that point on, we were able to say, "We're going to the park, but Odie is not invited; he has to stay home!" As he got older, we eventually ditched the name itself, but the separation between the anxiety and our boy, thankfully, stuck. Maybe if you just make a conscious effort to articulate the distinction when you're having those tough conversations with your son? Something along the lines of, "I love and support you, but your OCD is not going to dictate to me, and I'd prefer it didn't dictate to you, either. Tell me what I can do to help you shrink the OCD, because I'm not going to comfort it and make it feel at home because that's a disservice to you and your life."


Yes, there are some intensive OCD programs and a number of them are very good, I know. Rogers Memorial has a program in Florida run by Dr. Eric Storch (formerly of the Rothman Center in Florida), and I've heard great things about it. There're also great reviews for the Rothman program, also in Florida. For us, we felt that we were enjoying some success with local weekly (sometimes twice or even three times weekly for one stretch) therapy and the home environment, so we just stuck it out. But I would encourage you to look into those programs if the logistics work for you.


My DS's OCD didn't necessarily target school, but it definitely had a place there for a while; generally, he tried to hide it more there than he did at home, so that the other kids wouldn't make an issue of it with him. The tough part about the school environment, too, is that few teachers, administrators or even school social workers or psychologists really understand OCD, so they tend to give into the distressed student, rather than coach him and help him hold firm to pushing back on a ritual or obsession. So they can inadvertently give the OCD a safe harbor during the school day. Does your DS have a 504 plan or an IEP at the school? If not, you might want to consider one, at least for a while, to help him with some of those issues during the school day. That's a whole other topic, but there are, again, some excellent resources through the IOCDF, and your local therapist should be able to help you with that, as well.


I could go on . . . . :P Good luck with finding a local support group, and with your continued research. Just let me know if I can help.

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We recently did an intake for Rothman, although we hope to be able to get into our local OCD therapist on a regular basis (or even multiple times for the first couple of weeks or so). However, if not, we are planning on this route. I also did an intake for Rogers, but that program is normally 6-8 weeks and also twice as much (and our insurance does not cover until we meet our deductible. As a parent, I hope to also learn how to best react to the OCD in order to help DS make progress. He is 14, so he is old enough to take some ownership over it and I just want to make sure that we are using the right verbiage and techniques to help rather than set back...so I look forward to the therapy for all of us. Anyone have any direct feedback from Rothman?

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Ladymavs --


You could check in with DCMom on the PANDAS forum; she's had two kids go through the Rothman program and speaks very highly of it. There are several others over on that forum who've also attended and, I'm sure, would gladly give you some feedback.

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MJL --


I don't know about the McLean program specifically, but I do know that Massachusetts General (in Boston) has a new OCD clinic which is manned by some of the most respected doctors in the field:


Dr. Daniel Geller

Director, Pediatric OCD Program

Massachusetts General Hospital

Child and Adolescent Psychiatry, Yawkey 6A

55 Fruit Street

Boston, Massachusetts 02114

(617) 724-6300 x133-1056

(617) 503-1436




In looking up McLean, also, I see that its OCD clinic was formerly run by Jeff Szymanski who is now the Executive Director of the IOCDF, so its pedigree is strong. Hopefully, you'll be able to get some more direct feedback from some other folks soon.


Hang in there and just know that you're doing the best you can; that's all any of us can do.

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