Avoidance? Is that OCD too?

[T_Anna]

DS 14.5 has been on Clindomycin and Rifampin for just under 10 days to deal with rising strep #s. Since starting the meds last Saturday, he has ceased doing EVERYTHING...including all activities associated with OCD. His OCD was worst with the shower, toilet, praying, and clean clothes. He now sleeps on the couch, hasn't showered in 10 days, hasn't changed his clothes and only goes to the bathroom (BM) every few days.

 

Has the medecine made things worse?

 

We have an appt. with Dr.T today, he thinks it may be time for IVIG. I know many of you have done this, what questions should I ask today?

 

Thanks in advance,

T.Anna

[dcmom]

Hi T Anna-

 

Yes! Avoidance can be the compulsion part of ocd. Both of my kids tend to have this be their compulsion for whatever ocd they have. At times (because of ocd) they have avoided: getting dressed, going to the bathroom, washing hands, showering, touching things, going to school, going to afterschool activities, etc.

 

It is not necessarily the meds that made things worse, ocd can be progressive. For my kids it will start with a "worry" and then evolve into a whole panic/ fear/ avoidance situation.

 

I would consider asking Dr T about a steroid burst- prior to trying the IVIG.

 

Good luck!

 

e

[T_Anna]

We tried the steroid burst back in November. Not sure it improved things, but made him sad.

 

Will go over my notes this morning and double check.

 

Thanks,

T.Anna

[SurfMom]

Yes, avoidance is one of DD15's primary OCD symptoms...avoids showers, school work, writing, chores. Interestingly in other ways she is obsessed with perfection. Suspect the two are linked as she often avoids things that she cannot perfect. Never once like this pre PANDAS.

[MomWithOCDSon]

Yep. Excessive avoidance = OCD.

 

Been there, done that.

[Kathy4Him]

Yep. Excessive avoidance = OCD.

 

Been there, done that.

 

 

Nancy my DS, 23, avoids almost everything....speaking, driving. touching things - comoputer, books, washing hands, all his shirts but one, and almost all food except 5 things.

We have been dealing with this since July 2008 and it has gotten severe since 2010, after 1 month of ocd treatment at Rothman and various ssris. Nothing seems to help.

 

What did you find that helped the best with this?

 

Thanks, Kathy

[MomWithOCDSon]

 

Nancy my DS, 23, avoids almost everything....speaking, driving. touching things - comoputer, books, washing hands, all his shirts but one, and almost all food except 5 things.

We have been dealing with this since July 2008 and it has gotten severe since 2010, after 1 month of ocd treatment at Rothman and various ssris. Nothing seems to help.

 

What did you find that helped the best with this?

 

Thanks, Kathy

 

Hi Kathy --

 

I don't know your DS, but it sort of sounds like to me that he's either reluctant or possibly even refusing to "buy in" to the ERP, especially if Rothman couldn't get through to him. And maybe you and/or your family are inadvertently making it "comfortable" for him to do that? I mean, if you make sure to cook him or to have on hand the 5 things he'll currently deign to eat, for instance, then you might be supporting his avoidance of the other 105 things he could be eating instead, no? And if you give him a lift to somewhere he wants/needs to go when he's unwilling to drive himself, ditto?

 

Or maybe you are not in any way accommodating your son, and he still makes the avoidance choices, at the expense of things in his life that, in his shoes, you or I would find unbearable, but he deals with because he finds that preferable to facing those anxieties/situations?

 

I know my DS went through a period in which he refused to see the OCD as any kind of problem, as something he was willing to actively work against; rather, he made justifications and rationalizations for it, and would argue on its behalf, rather than face the fact that it was hampering him in his life.

 

We attended a session at the IOCDF conference a couple of years ago that featured a panel led by Dr. Storch from Rothman and included several members of his team. The message was pretty clear that, with older kids, if they're not participating in the ERP (which would lead to a lessening if not a cessation of the avoidance caused by OCD), then there has to be consequences for that. They cited a case study with a teenage boy in which he lost privileges (screen time, keys to the family vehicle) until he got with the program. Another example of the ERP/family participation/tough love component.

 

For our DS, the main issue was the time that the avoidance was sucking up into its yaw! There were some things he'd prefer to avoid but were non-negotiables (showering, brushing teeth), so he'd get them done eventually, but he would take 5 times what a "normal person" would take to get them accomplished. Try as we might, we could not seem to get him to recognize how much of his own valuable time (hanging out time, video game time, sleeping time) he was handing over to the avoidance; we kept pointing it out to him, and the being forced to partake in the task (non-negotiable) was its own exposure exercise, but night after night, day after day, he continued to throw hours down the proverbial drain.

 

So, we had to come up with a consequence that meant something to him, that he could feel the impact of. And we had to be relentless and consistent with it, too. We sat down with him and agreed upon a "reasonable" time for each of the avoided tasks; it was usually at least double the time DH and I thought of as "normal," but it still represented a sizable time-savings over his current record, and we all agreed that, as he got better at moving through the tasks with greater efficiency, we would continue to shrink his allowed window. The consequence if he blew his allowed window? His weekend bedtime/curfew got moved up 10 minutes for every 10 minutes he "blew". So, instead of being allowed to hang out with a friend until, say, 11 p.m. on a Friday night, there was one Friday on which he actually had an enforced turn-in at 9 p.m. That finally spoke volumes to him, and he began to power through some of the avoidance.

 

In the end, most times with our DS, it comes down to us drawing a line in the sand as in "Your OCD may be able to push you around sometimes, but it is not going to push us. And if you're not ready to take the initiative yourself to push back and claim your life and your time for yourself, then we're here to help you learn to do that." The plan, like with most things with our kids, is for him to learn to manage it all on his own over time, and he's already come a good ways toward that self-sufficiency. It's a work in progress.

 

So, I guess all that is a long way of saying, presuming your DS still lives with you and/or you continue to have a say in how he uses his time, conducts his days, etc., then you still have the opportunity to induce/persuade/require him to move forward with his life and exercise some control over the OCD. Of course, it's always best and preferable if the person with the OCD makes that decision himself and we're just there to support. But I've found sometimes it takes the consistent push-back by the "support crew" to let the OCD sufferer know that this is the name of the game . . . that giving up control and opportunity to the anxiety is too much of a waste for us to stand by and allow to happen.

 

Hope that helps, if only a little. Hang in there, and hang tough!

[tpotter]

 

Nancy my DS, 23, avoids almost everything....speaking, driving. touching things - comoputer, books, washing hands, all his shirts but one, and almost all food except 5 things.

We have been dealing with this since July 2008 and it has gotten severe since 2010, after 1 month of ocd treatment at Rothman and various ssris. Nothing seems to help.

 

What did you find that helped the best with this?

 

Thanks, Kathy

 

Hi Kathy --

 

I don't know your DS, but it sort of sounds like to me that he's either reluctant or possibly even refusing to "buy in" to the ERP, especially if Rothman couldn't get through to him. And maybe you and/or your family are inadvertently making it "comfortable" for him to do that? I mean, if you make sure to cook him or to have on hand the 5 things he'll currently deign to eat, for instance, then you might be supporting his avoidance of the other 105 things he could be eating instead, no? And if you give him a lift to somewhere he wants/needs to go when he's unwilling to drive himself, ditto?

 

Or maybe you are not in any way accommodating your son, and he still makes the avoidance choices, at the expense of things in his life that, in his shoes, you or I would find unbearable, but he deals with because he finds that preferable to facing those anxieties/situations?

 

I know my DS went through a period in which he refused to see the OCD as any kind of problem, as something he was willing to actively work against; rather, he made justifications and rationalizations for it, and would argue on its behalf, rather than face the fact that it was hampering him in his life.

 

We attended a session at the IOCDF conference a couple of years ago that featured a panel led by Dr. Storch from Rothman and included several members of his team. The message was pretty clear that, with older kids, if they're not participating in the ERP (which would lead to a lessening if not a cessation of the avoidance caused by OCD), then there has to be consequences for that. They cited a case study with a teenage boy in which he lost privileges (screen time, keys to the family vehicle) until he got with the program. Another example of the ERP/family participation/tough love component.

 

For our DS, the main issue was the time that the avoidance was sucking up into its yaw! There were some things he'd prefer to avoid but were non-negotiables (showering, brushing teeth), so he'd get them done eventually, but he would take 5 times what a "normal person" would take to get them accomplished. Try as we might, we could not seem to get him to recognize how much of his own valuable time (hanging out time, video game time, sleeping time) he was handing over to the avoidance; we kept pointing it out to him, and the being forced to partake in the task (non-negotiable) was its own exposure exercise, but night after night, day after day, he continued to throw hours down the proverbial drain.

 

So, we had to come up with a consequence that meant something to him, that he could feel the impact of. And we had to be relentless and consistent with it, too. We sat down with him and agreed upon a "reasonable" time for each of the avoided tasks; it was usually at least double the time DH and I thought of as "normal," but it still represented a sizable time-savings over his current record, and we all agreed that, as he got better at moving through the tasks with greater efficiency, we would continue to shrink his allowed window. The consequence if he blew his allowed window? His weekend bedtime/curfew got moved up 10 minutes for every 10 minutes he "blew". So, instead of being allowed to hang out with a friend until, say, 11 p.m. on a Friday night, there was one Friday on which he actually had an enforced turn-in at 9 p.m. That finally spoke volumes to him, and he began to power through some of the avoidance.

 

In the end, most times with our DS, it comes down to us drawing a line in the sand as in "Your OCD may be able to push you around sometimes, but it is not going to push us. And if you're not ready to take the initiative yourself to push back and claim your life and your time for yourself, then we're here to help you learn to do that." The plan, like with most things with our kids, is for him to learn to manage it all on his own over time, and he's already come a good ways toward that self-sufficiency. It's a work in progress.

 

So, I guess all that is a long way of saying, presuming your DS still lives with you and/or you continue to have a say in how he uses his time, conducts his days, etc., then you still have the opportunity to induce/persuade/require him to move forward with his life and exercise some control over the OCD. Of course, it's always best and preferable if the person with the OCD makes that decision himself and we're just there to support. But I've found sometimes it takes the consistent push-back by the "support crew" to let the OCD sufferer know that this is the name of the game . . . that giving up control and opportunity to the anxiety is too much of a waste for us to stand by and allow to happen.

 

Hope that helps, if only a little. Hang in there, and hang tough!

 

Or, he may be herxing. It is pretty well known that ERP will not work if there is too much underlying infection. You have to deal first with the infection. My DS has been getting treated for all kinds of infection for years (4+), and has been sick for over 8 years...took us 4 years to even get diagnosed). He is just now able to start doing the ERP. And, yes, avoidance is definitely an OCD. Herxing is where the symptoms get worse before they get better, and is a symptom of lyme and co-infections. Please rule these out, if you haven't already.

[T_Anna]

Thanks for the responses.

 

We went to Dr.T and we will try Doxycycline while we wait for IVIG and add steroid again on Day 5. It's a little daunting after we all we tried Augmentin XR, Biaxin, Valtrex, prednisone that nothing really worked....except Advil! Last night he had a complete breakdown after I suggested that he shower and he also complained of if a blinding headache. He took 3 advils and then two more (his regular advils at night) and was totally human again in 20 minutes (no crying, head banging, etc), even laughing/funny.

 

Dr.T said that the fact that the Advil clearly works is encouraging for IVIg results.

 

Thoughts? Anyone have any experience with Doxcyclomin?

 

Dr.T also though DS may be very sensitive to sedative effect in Luvox since he is sleeping so much.

 

T.Anna