When do you say, "NO"

[Joan Pandas Mom]

When do you say no to OCD's demands, get this do that, wrong cup get another one, turn on the tv, turn it off, then on again, on, and on and on. I'm really gong crazy. Am I making him worse? I feel like I am giving an alcoholic a beer every time I give in to a compulsion. He is 3 1/2 weeks post IVIG #3. He absolutely refuses to doing any exposure work.

[thereishope]

That's a hard one since refusing to give into a part of the OCD (and sticking to it) can help them overcome it in the long run but it can also cause a lot of anxiety.

 

I had to take part in A LOT of my son's OCD. Then I started to decide what we should start to help him overcome it (since that time it wasn't shedding on its own)and started to say no here and there. Now, I did not go cold turkey and say no to everything, but baby steps. But you have to be mentally ready for the anxiety and the guilt you will feel.

Edited December 26, 2010 by Vickie

[formedbrds]

I

Edited January 16, 2011 by formedbrds

[Stephanie2]

Personally, I used to partially give in. If he repeatedly asks me to do/say something I'll go along the first few times then tell him, this is the last time I am going to do this. It did seem to help a little.

 

These days, however, now that we are further along in treatment and at a very good place - if OCD pops up I don't waste my energy trying to fight it. I just go along, then give some ibuprofen, then call the doc, then start an antibiotic and we are good again within a day or so. Not worth fighting if I know that an abx will wipe it out immediately.

 

I have to say, though, that 3 weeks post IVIG I just did whatever I had to do to survive. Not sure if it's worth fighting right now. that depends on your level of exhaustion/trauma at this point. Save your energy for the important battle of getting him well. Just my personal opinion here...

[MomWithOCDSon]

We've been dealing with OCD in our home for a long time and, initially, with the support of his CBT therapist even, we would do what we called "throwing the OCD a bone." Meaning, while there some non-negotiables (such as those noted previously here -- those behaviors or demands that might negatively impact health or safety), we would pick our battles and sometimes indulge -- or allow DS to indulge -- an OCD thought or compulsion, so long as it was not disruptive.

 

As DS has gotten older, however, and the OCD more insidious, I've come to wonder about our earlier complicity. I know it "helped" us short-term, but did it hinder him long-term? My personal fear is that maybe it did, and we've been unwitting participants in helping the OCD grow and gain a more substantial foothold.

 

I also see and hear what others say about how, unless there's some palpable ability on your child's part to engage in exposure response prevention therapy, expecting him to do so or insisting that he do it may be unrealistic. I know that when our DS was in the depth of his PANDAS, prior to antibiotics, he had a very low threshold for attention, frustration or challenge. Still, at least in his case, there were some gentle ERP exercises and everyday measures that he could take, so long as we made it clear that was the expectation on our part. Also, we moved from our existing CBT therapist to one who is specifically focused on ERP and anxiety disorders, and that additional support for both DS and us as his parents helped tremendously.

 

In the end, I think, past a certain point, you cannot demand that your child complete his ERP exercises or move past his compulsions without engaging in rituals, etc., but you should be able to remove yourself as part of the OCD's scheme. Basically, by joining in his indulgence of the OCD, no matter how much you may verbally eschew it, you're still tacitly supporting it's attempt to control your DS and the situation at hand; actions speak louder than words, especially to bright kids, no matter how overwhelmed they appear to be.

 

So, when the going gets tough in our house these days, we're apt to tell DS, "We're not going to let the OCD boss us around; the choice you make in that regard is up to you." So, we won't rewind the movie for a third time so he can make sure he got every syllable of dialog, and we don't allow him to confess his latest imagined transgression. When he wants to indulge a ritual rather than get his jacket on and out the door to school or an appointment, we tell him, no, it's time to move on. Sometimes it does create more chaos in the short run, but we've seen the long-term gains as he becomes better and better able to recognize that the world doesn't revolve around OCD, and perhaps he's better off if his world doesn't revolve around it either!

[smartyjones]

not as long term therapy for him, but as short-term coping for you. . . could you make deals with him? such as, "i'll turn off the TV this time and next time you do it, agreed?"

i don't know what specifics you are talking about but this worked for us with ds. . . "i'll stand next to you in the bathroom this time and next time, i'll stand one step out" then it would be two, then three, etc. after the initial set up, i would only tell him the step we were doing at the time.

he was not willing to discuss or listen to anything more than the one step and if he wasn't willing to do it, i'd reduce it or do what we'd done before.

working the tiny baby steps seemed helpful to give me some element of control rather than being a slave to what he was screaming about and although sometimes, the progress was ridiculously slow, i felt better that we had some sort of a plan rather than everything being out of control.

[LNN]

As DS has gotten older, however, and the OCD more insidious, I've come to wonder about our earlier complicity. I know it "helped" us short-term, but did it hinder him long-term? My personal fear is that maybe it did, and we've been unwitting participants in helping the OCD grow and gain a more substantial foothold.

 

In the end, I think, past a certain point, you cannot demand that your child complete his ERP exercises or move past his compulsions without engaging in rituals, etc., but you should be able to remove yourself as part of the OCD's scheme. Basically, by joining in his indulgence of the OCD, no matter how much you may verbally eschew it, you're still tacitly supporting it's attempt to control your DS and the situation at hand; actions speak louder than words, especially to bright kids, no matter how overwhelmed they appear to be.

 

So, when the going gets tough in our house these days, we're apt to tell DS, "We're not going to let the OCD boss us around; the choice you make in that regard is up to you."

Nancy said it all so well. In the midst of an episode, doing even one small ERP step may be an enormous undertaking - and should be wildly celebrated if a child even attempts to stand up to OCD, regardless of their success. But I think it's really important that you as the parent convey an expectation that just because something is really hard doesn't mean you don't even try. And I think it's key that you refuse to participate in rituals as much as possible.

 

You cannot force anyone to do ERP. They must make the choice themselves. But you can make a choice whether to be an actor in someone else's play. I totally get how stressful it can be to say No. But when you participate, you send a message that the OCD thought has legitimate power. That it's somehow "real" and should be obeyed. The only way to rob OCD of its power is to not give in to it and you as the parent have to set the example. In the book "What to Do When You Worry Too Much" it describes worries as tomato plants. Water them and pay attention to them and nurture them and they grow strong. Ignore them and they wither and die.

 

So I think even in the worst of times, you need to do as Smarty suggests - even just one small ERP step a day, celebrated and rewarded, is so important. And if your child can't take that step, then at least you can by not playing a role. Maybe on day one, you can't refuse all participation. Maybe you just refuse to comply with one compulsion one time. Then tomorrow you make it twice. Maybe you give your child ten pennies and say "If you want me to participate, you have to pay me a penny. You decide which compulsions you need me to comply with. But when you're out of pennies, I'm done for the day." By doing this, you'll at least be doing step 1 of ERP - which is catching OCD in the act and naming it for what it is. Then in a few days or a week, you only give 9 pennies, etc.

 

I agree you still have to work on the medical part, getting rid of the cause of an autoimmune/infection triggered OCD episode. But in the meantime, like Nancy said, you don't want to be entrenching habits and giving those OCD thoughts legitimacy. Baby steps...but steps nevertheless.

[airial95]

This was something we struggled with for some time, and still do. Our son made so much progress on the abx, but we still had a lot of elaborate rituals that mostly had to do with me doing things a certain way (he's younger). So I can definately relate to the topic. For us, I think we realized that we weren't helping him get better by allowing him to indulge in these things. What started as a survival technique, quickly got out of control. His breakfast/drop off ritual at school went from being a few simple steps to lasting over 40 minutes every day before I could get out of there (and being so elaborate I could rarely get it right - and heaven forbid if the pop tart was broken!!!).

 

We had agreed that we would try to get his health under control (good luck!) prior to starting therapy, but realized that we might be doing more harm than good by allowing him to indulge in all of his compulsions.

 

We started by attacking the most disruptive ritual first (which was the breakfast/drop off). It took about 6 weeks of very hard work (a LOT of late mornings into the office and a LOT of tears and motrin afterwards) But he eventually was making significant enough progress that just the reminder of his "reward" (Thomas the Train stickers in his case) was enough to help him through.

 

However, the whole time we worked on this, we "gave in" to ALL of the other compulsion (as long as they weren't dangerous, as previously stated). And that's the way we've continued to work with the therapist - to combat 1 thing at a time. While we work on that one single thing - all of the others are allowable. When we get to the point where that compulsion/ritual/etc... is under his control, we move onto the next thing.

 

We started with the big one, it was too disruptive, and because quite frankly I couldn't justify being a couple hours late for work every day any more! But after that, we've started with the smaller things (touching/counting the Christmas lights for exmple). He feels so proud about tackling these small things, that it has helped our progress as we move on to the bigger bads.

 

It's not easy, espcially when they're off (like after having IVIG in your case, or being taken off his abx in ours). And there are days where we feel like we took a GIANT step backwards, but the next day, when we see him get into the car and tells us, "Mommy, I'm not going to touch the candy canes today." It does make it worth it.

 

Start small, with one of his more "milder" compulsions or obsessions, and if he's working through it (even unsucessfully but trying), PRAISE PRAISE PRAISE and REWARDS!!! That's worked wonders for us. To the point where my child announces to strangers things like "I didn't count the candy canes today!!" all excited, and they look at us like we're a family of loons.

 

The bottom line is only you know your child well enough to know what he can and can't handle. Good luck!!

[thenmama]

xx

Edited March 26, 2013 by thenmama

[emmalily]

In my personal experience, my PANDAS-OCD only increases in severity due to how physically ill I am, never in correlation to how much people give in or do not give in to me. After getting on the right combination of antibiotics, the impulse in my brain to complete compulsions disappeared and I was happy to stop engaging in the habits that had formed from them.

 

I think this is very different than true OCD. In that case, it is most important to not give in to OCD because it really could take over... in PANDAS, well, in my case it just didn't work that way.

 

It sounds like a lot of people are afraid their child's autoimmune problem (PANDAS) will turn into a real, full-blooded mental illness if they give in the compulsions and I've got to say, I just don't think that's how it works. I could definitely be wrong, but true OCD does not just develop in a person--it has to be brought on by complex psychological and biological happenings. Certainly, giving in now could could cause bad habits to be created, but bad habits are not Obsessive-Compulsive Disorder, and it's probably a heck of a lot easier to break those bad habits when they're well than to try to rationalize with someone who's brain is literally inflamed.

 

Obviously, no one wants their life ruled by their or their child's OCD, and finding solutions to make it OCD less inconvenient makes plenty of sense, but maybe its not something to worry about making worse. And that also may be individual to each child; some may need the help of ERP/CBT to get through this, and some may not need it.

[thenmama]

xx

Edited March 26, 2013 by thenmama

[rockytop]

You all have given such fabulous advice and knowledge about CBT/ ERP and when to know how to pick your battles. I have tried to pick my battles carefully and we get nowhere. I have not really made any progress and I understand that there is a definite autoimmune component that needs treatment. MY child refuses (in a PANDAS sort of way!) IVIG or PEX and also antibiotics or steroids-- she will occasionally take Riluzole for the OCD.

Our first psychiatrist was so blown out of the water by my child that their suggestion was just to do whatever to ease her stress at the time. So, we definitely "fed" her OCD. We did not know it was PANDAS at the time and did what we were told.

Edited May 26, 2011 by rockytop

[smartyjones]

rocktop - i know this is not the solution you are looking for. . . have you read The Explosive Child? it's good to hear you have a pandas dr b/c it does sound that is what you need. i'm sorry to hear of her trouble.

 

i don't recommend the explosive child for you to work on her behavior b/c i know how that is with a pandas child. . . i recommend it to give you some coping techniques that can help you when she is in a rage so that you are not a slave to it and you can have some element of control with where and how you want your reactions to be.

 

the book is written in a manner of getting control and changing the child's behavior but that is not how i see it with a pandas child -- i see it as more a way to give a worn out parent some options. . . that's what it was for me. by using the repeating technique it enables me to be involved with my son when he is out of control without being dragged into it all.