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this is the thing i just can't get about OCD - does it have to be tied to other thougths of calamity or can it just be that he wanted that order and it's not fulfilled and that's that without anything else?

 

so what to do about it? push it so that things are out of order and he has to deal with it to get over it? if it had been some other situation, i would have done things differently -- one other time he didn't want to go to someone's house for XYZ reason, i can't remember. i said fine, you can stay in the car if you want, you've got books, you can read, we planned on going and we're going. by the time we got there, he'd decided he did in fact want to go and it was all okay. however, this was my friend and her 2 year old - so neither would care if he obnoxiously threw a fit that he didn't want to be there. today, this other kid loves my son and would be so upset if he heard him say he didn't want to come to his house so i couldn't just push on.

 

generally, what's the answer? continue with the plan that is out of order?

 

I can say that our son has never had "calamity thoughts" associated with his having to do things a particular way; in other words, he's never articulated that he would necessarily even get sick, let alone die, from all of his contamination fears. It's simply that the contamination itself leads to unbearable anxiety that prevents him from moving on or enjoying anything else until it has, in his mind, been successfully addressed.

 

The same seems to apply to the events displaying his inability to be flexible or spontaneous, or to just go along with someone else's agenda rather than his own. It's not that something awful will happen to him or anyone he loves if he willingly allows the situation or event to shift; it's just that shifting brings on another round of overwhelming anxiety that he can't get past in order to enjoy the change in plans. Like you, we're pretty sure that once we got him to this new, unexpected event or place, he would really enjoy himself and forget all about being anxious over the change, but it is a double-edged sword. You either have to be prepared to roll those dice in public and withstand whatever meltdown might ensue until his OCD brain "makes peace" with the turn of events, or you have to engage your friends and family into the plan to try and help "building his flexibility," by asking for their indulgence as you work through this particular piece of the puzzle.

 

As an example, my son has a friend whom he's known since kindergarten and lives in our same neighborhood; I'll call him Adam. Adam is one of those kids who's pretty even-tempered and accommodating, so he and my son get along well because Adam will pretty much go along with my son's plans, order of attack, etc. I'm sure Adam was always clued in that our son was a bit "different" in the way he approached many things, but rather than try and explain the situation to another child, we elected to talk to Adam's parents. So when there was a birthday party or an invitation to go somewhere together (like to the movies or sledding) and our son would get anxious or have some issues with the separation (also can be a part of the anxiety disorder that manifests primarily as OCD), Adam's parents were informed and able to pitch in as necessary. And the reality is, 99% of the time that we actually convince our son to just "move on" and TRY accepting an unexpected turn of events, especially if he's in the company of others that exclude us, he finds a way to cope and enjoy himself. Now, he might have a fresh meltdown when he gets home because he's held all the anxiety at bay in order to get along with his friend, but he generally makes it through the event itself just fine.

 

As for blurting out something along the lines of, "I didn't want to come to your house anyway!" or "I don't want to be here!" I've heard all sorts of kids say things like that in anger, frustration or anxiety, so I don't think it has to be a deal-breaker, especially if the other kid's parents are informed about the situation. I'm always amazed by how quickly kids recover from such rude, unkind, immature "verbal explosions," maybe because they accept them at face value and inherently understand that they are temporary, while we adults tend to attach more long-lasting repercussions to them because if you heard that kind of stuff out of an adult mouth, you'd have every reason to be seriously insulted?!?! I know that sometimes our son will say things impulsively or out of anxiety, either at school or in front of a friend, and once he reports it to us we're like, "Well, did you apologize for saying that?" or "How did Adam react when you said that?" And 99% of the time, the response was something along the lines of "No big deal," or "I knew you didn't mean it," or "It's cool, dude."

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Meg's Mom and anyone else with ideas... I am struggling with the whole motivation idea. In the past, I have used the prize box. Again, my son is 4.5 so this can be very motivating. BUT... it also tends to become something he obsesses over. Then all he talks about is the prize box and wants to look at everything, take it out, put it back in, etc. Same goes for a new toy/book incentive. All he talks about is going to the bookstore, for example. Then when he goes, afterwards he obsesses over something else he should have gotten and wants to go back and change. Any ideas for getting past this? Of course, he also does not eat much these days so something like ice cream as a reward does not work. And again, the big trips as a reward seem so hard for a 4yo in general, much less one with OCD.

 

It is funny to me in hindsight to think back when he gave away his pacifier. He was not in an episode and did it much easier than I expected with a toy as a reward at the end of a week without it. About two weeks later, I tried it again with sleeping in his own bed through the night and it backfired. He just obsessed over the toys and was in an episode (in hindsight) with severe sep. anxiety. Then he started asking for his paci back too. This is tricky parenting!!

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Meg's Mom and anyone else with ideas... I am struggling with the whole motivation idea. In the past, I have used the prize box. Again, my son is 4.5 so this can be very motivating. BUT... it also tends to become something he obsesses over. Then all he talks about is the prize box and wants to look at everything, take it out, put it back in, etc. Same goes for a new toy/book incentive. All he talks about is going to the bookstore, for example. Then when he goes, afterwards he obsesses over something else he should have gotten and wants to go back and change. Any ideas for getting past this? Of course, he also does not eat much these days so something like ice cream as a reward does not work. And again, the big trips as a reward seem so hard for a 4yo in general, much less one with OCD.

 

It is funny to me in hindsight to think back when he gave away his pacifier. He was not in an episode and did it much easier than I expected with a toy as a reward at the end of a week without it. About two weeks later, I tried it again with sleeping in his own bed through the night and it backfired. He just obsessed over the toys and was in an episode (in hindsight) with severe sep. anxiety. Then he started asking for his paci back too. This is tricky parenting!!

 

It is tough at that age (4-5) and, unfortunately, it doesn't get a whole lot easier because the stakes get higher. A yo-yo or a new baseball don't hold quite the same appeal at 8 or 9, and then you're expected to come up with enticements that actually bear enough weight to get the job done! B)

 

One thing our therapist suggested, even at 6 which seemed to work and might work even better for slightly younger kids, is sort of a "performance chart." Just a chart you could get at the school/educational supplies store (or one you make yourself out of poster board) with columns and rows marked off. Then, if there's a behavior you find you need to modify, you write it in the left-hand column and then on the same row, extending across to the right of the chart, award your kid a sticker for everytime he's able to forego the behavior. Then you can decide that, for instance, 5 stickers will mean he gets a new book, or 10 stickers means he can go see a new movie or rent one from the video store, or whatever. He might be less inclined to obsess over the stickers than he does a tangible prize or prize box, and it also plants the concept of slightly delayed gratification without becoming obsessed over it, which is a lesson my son really needed help grasping. For sleeping in his own bed, for instance, the gratification could even get strung out, with increasing rewards . . . maybe 2 nights means he can pick out a new "bed critter" for night time, maybe 3 nights means he gets an extra story before turning out the light, maybe a whole week means something really meaningful to him?

 

As for second-guessing the prize choice after the fact . . . oh boy, have we seen THAT! :wacko: It even extends to Christmas and birthday presents, where we'll get him what he asked for, only to have him ruminate that maybe he wasted that "wish" because he should've saved it for something bigger or better later on, etc. It's tougher at 4, but we try reminding our son that this is OCD "second-guessing" and that it is not real. That there'll be another opportunity for him to earn whatever else he may have his eye on, so he should enjoy what he's picked or been given now, without regrets.

 

"Tricky" is an understatement . . . . !! :P

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Thanks for the suggestions. I forgot about the chart. We used that for both the paci and sleeping in his bed. Doesn't always work but it is better than the prize box. He also gets a daily report at school which works for him. They give either a check or an x mark for 10 different things throughout the day. If they get all checks, they get a stamp and if they use their proper "friendship skills", they get a sunshine award. He really likes to see the stamp and sunshine award on his paper... so it is motivating. But I have also seen him break down in a full sob when he has gotten a bad paper. Talk about breaking my heart!!! But again... it does motivate.

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My son, even at 6, is a smarty and knows how to get what he wants. He doesn't want to "waste a wish" so he lies and tell us his brother wants it on his list. This in hopes that we get the brother the item and they will eventually share. And he will ultimately get more of what he wants.

 

 

As for second-guessing the prize choice after the fact . . . oh boy, have we seen THAT! B) It even extends to Christmas and birthday presents, where we'll get him what he asked for, only to have him ruminate that maybe he wasted that "wish" because he should've saved it for something bigger or better later on, etc. It's tougher at 4, but we try reminding our son that this is OCD "second-guessing" and that it is not real. That there'll be another opportunity for him to earn whatever else he may have his eye on, so he should enjoy what he's picked or been given now, without regrets.

 

"Tricky" is an understatement . . . . !! :wacko:

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My son, even at 6, is a smarty and knows how to get what he wants. He doesn't want to "waste a wish" so he lies and tell us his brother wants it on his list. This in hopes that we get the brother the item and they will eventually share. And he will ultimately get more of what he wants.

 

 

As for second-guessing the prize choice after the fact . . . oh boy, have we seen THAT! B) It even extends to Christmas and birthday presents, where we'll get him what he asked for, only to have him ruminate that maybe he wasted that "wish" because he should've saved it for something bigger or better later on, etc. It's tougher at 4, but we try reminding our son that this is OCD "second-guessing" and that it is not real. That there'll be another opportunity for him to earn whatever else he may have his eye on, so he should enjoy what he's picked or been given now, without regrets.

 

"Tricky" is an understatement . . . . !! :wacko:

 

"Smarty" might be an understatement, too! :P You're gonna have to keep an eye on him as he gets older! He's already got the "crafty gene."

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Meg's Mom and anyone else with ideas... I am struggling with the whole motivation idea. In the past, I have used the prize box. Again, my son is 4.5 so this can be very motivating. BUT... it also tends to become something he obsesses over. Then all he talks about is the prize box and wants to look at everything, take it out, put it back in, etc. Same goes for a new toy/book incentive. All he talks about is going to the bookstore, for example. Then when he goes, afterwards he obsesses over something else he should have gotten and wants to go back and change. Any ideas for getting past this? Of course, he also does not eat much these days so something like ice cream as a reward does not work. And again, the big trips as a reward seem so hard for a 4yo in general, much less one with OCD.

 

It is funny to me in hindsight to think back when he gave away his pacifier. He was not in an episode and did it much easier than I expected with a toy as a reward at the end of a week without it. About two weeks later, I tried it again with sleeping in his own bed through the night and it backfired. He just obsessed over the toys and was in an episode (in hindsight) with severe sep. anxiety. Then he started asking for his paci back too. This is tricky parenting!!

One of the challenges in OCD, is that you are trying to work on one issue in baby steps. But sometimes another OCD issue steps in & makes the solution tricky! The problem very likely is decision making - this is a common issue in OCD. Every decision feels like it is "just wrong". Different developmental ages will then make this problem a different reason. It can morph into contamination (If I choose the wrong thing, I will get sick), scrupulosity (If I choose the wrong thing, I will hurt someone & it will be my fault, or I will offend God or my mom), obesessive slowness (being simply unable to make a mark on the paper because they are unable to make a decision, fearing that decision/answer will be wrong) etc. But it's all the same stuff.

 

So basically you don't want to reward them with something that just causes another OCD issue. If you know another OCD issue is coming up - then try to find a creative way to pre-empt it, so that your reward system is not accidentially demotivating (or frustrating for you). So in this case, I would suggest reward systems that DO NOT require him to make a decision. For this age, a sticker program can be great. But YOU choose the prize they are working towards, no questions asked. We had this issue for a while on a number of fronts, and without saying "I am doing this to accomodate OCD" - I would eliminate many decisions - and had to be relatively strick about what she could have. No negotiating. Then when we got to it, we'd work on the decision making OCD (if you want this plan, let me know, otherwise, I'll focus on the motivation question here). A few alternatives to the prize box:

 

* Go to dollar store & get lots of items. Put them in a prize box, decorate it & put it on top shelf where it can be seen but not touched. When he gets a prize, you will reach in the box & pull a random prize. Be sure all the prized are good. Don't show him the prizes ahead of time. You may want to make the first 2-3 really good, so he is interested in the box. No decisions allowed from the child.

* Pick a prize - shop ALONE! Put a point system on it (a reasonable 2 - 3 day prize). Have him earn points towards this prize only.

* Have prizes be things such as 10 minutes extra TV time, 1 extra page of reading at bedtime, a fun short game with mom, one scoop of ice cream, a sticker. Things that you award, but he does not decide about.

 

Doing decision making ERP can be challenging, but it is very effective. As always, if PANDAS, we found that antibiotics helped make the ERP SO MUCH easier to accomplish!!! Treat your child medically as well.

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We did the same thing as Meg's mom. Julia had lots of trouble in the morning getting ready for school. We started this after she started antibiotics, and was not in THE worst part of her episode. We required only three things: she had to get dressed, brush her hair, and go to the bathroom. Then she could pick a prize (she loved bringing the prize to school and showing to her friends).I bought a BUNCH of stuff at the local toy shop, and the dollar store (trying to stay at $1-3 per item), and wrapped it and put it in a bag. The decision was sometimes hard- but she would do it (I think the fact that they were wrapped helped). Her older sister participated as well- which helped make it more fun.

 

The psychologist felt she needed a fun, IMMEDIATE, tangible reward. (oh, and stickers got us no where).

 

Luckily, we did this at the end of the school year last year - it could break the bank! We haven't needed to do it this year at all- and the funny thing is, she mentioned it recently, but couldn't remember WHY we did those prizes B)

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meg's mom - i do so appreciate all your long posts and good advice!

 

here's where i get hung up - he's not an active participant so the fear thermometer has to be done by me unbeknownst to him - at least that how we did the potty desensitization and what we're doing with the school potty. he can do a step a day but will not participate in any preplanning. i have a chart that i write the step on after he's done it, it's a type of fear thermometer with 10 spots(you could use it for fears from 1-10, but he won't - we just write on it), when it's complete - we have a basket of wrapped small $1 store things. he is very happy to get one. however, this is an added bonus to something he is willing to do already - it would never be a motivating tool. nothing matters as much as what he wants to avoid.

 

early on in the potty training, i jumped ship from rewards, etc b/c it was only serving to drag me further into it seeking out what 'it' was going to be that was going to make him act. i truly believe when his mind is set to avoid, he'd sit in a burning house rather than do whatever it was.

 

i do appreciate what you say about what we see being the tip of the iceberg. you've given a lot of good info and i plan to go over it in better detail as well as get the worry hill book.

 

from another post you wrote, i would say he has avoidance as the compulsion. now - how do you resist the compulsion if the compulsion is avoidance and he's not a willing participant. i seem to understand how you would work to resist not washing your hands for 30 seconds - i can't seem to wrap my head around how you resist avoiding doing something other than to just do it and therein lies the whole issue.

thanks!

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Smarty --

 

We have major avoidance issues in our house, my son is older than yours and we only recognized it as avoidance fairly recently because he was so good at cloaking it in other explanations! Kudos to you for seeing through the forest to the one, important tree!

 

As guided by our therapist, attacking and preventing acts of avoidance has been pretty hard-core. We just have to prevent him from doing it (avoiding) because every avoidance just increases the anxiety he has over that which he avoids the next time he encounters it. Our son came up with a list of "coping statements" that he repeats, almost like a mantra, when he wants to avoid something, like "Avoiding this is harder than doing it," and "It will get easier once I begin." And sometimes, we have to literally prevent him from avoiding. Like, he'll be getting started on homework and something will trigger him, and he'll want to leave his chair and desk and go throw himself on his bed or in his papason chair. So we have to physically stop him sometimes, reminding him to do his deep, relaxation breathing and calm himself and stay put, rather than yielding to his "fight or flight" instincts. Some days go better than others, but I can tell you that, every time, he feels better about himself and his power over the OCD when he's able, with or without our help, to conquer the desire to avoid and see a task through to its completion.

 

I think a good therapist might be your best resource for addressing avoidance behaviors in a younger child. It is an ever-changing landscape, and while you don't want to traumatize him, if he continues to avoid, what he avoids might only become a bigger obstacle to him in the long run. B)

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meg's mom - i do so appreciate all your long posts and good advice!

 

here's where i get hung up - he's not an active participant so the fear thermometer has to be done by me unbeknownst to him - at least that how we did the potty desensitization and what we're doing with the school potty. he can do a step a day but will not participate in any preplanning. i have a chart that i write the step on after he's done it, it's a type of fear thermometer with 10 spots(you could use it for fears from 1-10, but he won't - we just write on it), when it's complete - we have a basket of wrapped small $1 store things. he is very happy to get one. however, this is an added bonus to something he is willing to do already - it would never be a motivating tool. nothing matters as much as what he wants to avoid.

 

early on in the potty training, i jumped ship from rewards, etc b/c it was only serving to drag me further into it seeking out what 'it' was going to be that was going to make him act. i truly believe when his mind is set to avoid, he'd sit in a burning house rather than do whatever it was.

 

i do appreciate what you say about what we see being the tip of the iceberg. you've given a lot of good info and i plan to go over it in better detail as well as get the worry hill book.

 

from another post you wrote, i would say he has avoidance as the compulsion. now - how do you resist the compulsion if the compulsion is avoidance and he's not a willing participant. i seem to understand how you would work to resist not washing your hands for 30 seconds - i can't seem to wrap my head around how you resist avoiding doing something other than to just do it and therein lies the whole issue.

thanks!

 

We had so much avoidance that Meg had agoraphobia. So I get what you are saying. Tell me some more things that he avoids.

 

Meg also would not do the fear theremometer at first. So I'd suggest an idea that we could do - and she would cry. It was awful. We figured out that she could not tell me if a fear was a 1 or a 4, because of Scrupulosity. She felt that if she told me the wrong number, that this would be a lie and the result would be that I would leave her. Talk about breaking your heart! Once we figured this out, we asked her to rank them such as it's a 3-7 or a 1-4 or whatever (somethings were 1-10 - ummm, helpful!). This made the heirarchy a little tricky to tackle at first, but asking her which of the things on the fear heirarchy might be easiest was the best way - I would suggest 2 and let her choose if she was able.

 

I think that kids do need to participate, or they are not retraining their brain. They don't have to choose all the things or tell you everything. But they need to understand the concept a little - and get that they are doing something brave, so that they can start using another part of their brain to beat up OCD in the smallest step possible. So you have a very valid question. Keep in mind that the first few things you ask them to try can be really silly - so easy that they are already accomplishing it 99% of the time, it just kind of bothers them. Reading books really helped Meg learn about how kids do this, so start there. You can spend a couple of weeks making him a detective. He does NOT have to fight during this time. He does not have to rank the fears. He doesn't even have to tell you why. He can just tell you "what things does that nasty OCD try to get you to not do?" Reward him if he can come up with one thing in a day. Remind him when you see OCD by saying "hey by the way, don't forget that you can win a reward tonight if you do your detective work." This starts self awareness of the fact that OCD is causing these issues, and that he doesn't really want to avoid, but is being "told" to by the mean nasty OCD (he can name OCD - we like worryman, but I love some others, like Stupid Guy - kids may especially like being able to call the worryman something like "stupid" that they are not normally allowed to say.

 

Make a goal to do detective work for the next 2 weeks. One thing a day. If he wants to tell you more, give him a giant hug & tell him how amazingly brave he is. If you find that he cannot even do detective work, after you work with him for a few days, then OCD may be telling him something bad will happen if he tells anything about OCD. This makes it especially tricky (nasty disease), but you can find other ways to communicate. Like you can give him some top secret chips, and when OCD is being mean, he can just sneak you a chip, maybe putting it in your pocket without speaking, or just sliding it under a placemat, so no one can see except you. Or maybe he can come touch your ear - whatever, a secret signal that the mean OCD won't really know about.

 

Keep in mind that when tackling OCD at first, you want to find the tiniest part of the anxiety and just motivate him to do that. You aren't asking him to do the entire thing that he avoids - but a small part of it (such as walking by a restaurant, touching the door, putting one foot inside, sitting a booth, ordering just water, watching mom eat, etc) or a different way of doing it - a first step might even be drawing a picture of it, or imagining doing a small part of it. Then you discuss how this was beating up OCD (or whatever name) & at minimum, praise & love for the effort. We always praise the effort even if not succesful and talk about what we'll do when we try it again.

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Smarty --

 

We have major avoidance issues in our house, my son is older than yours and we only recognized it as avoidance fairly recently because he was so good at cloaking it in other explanations! Kudos to you for seeing through the forest to the one, important tree!

 

As guided by our therapist, attacking and preventing acts of avoidance has been pretty hard-core. We just have to prevent him from doing it (avoiding) because every avoidance just increases the anxiety he has over that which he avoids the next time he encounters it. Our son came up with a list of "coping statements" that he repeats, almost like a mantra, when he wants to avoid something, like "Avoiding this is harder than doing it," and "It will get easier once I begin." And sometimes, we have to literally prevent him from avoiding. Like, he'll be getting started on homework and something will trigger him, and he'll want to leave his chair and desk and go throw himself on his bed or in his papason chair. So we have to physically stop him sometimes, reminding him to do his deep, relaxation breathing and calm himself and stay put, rather than yielding to his "fight or flight" instincts. Some days go better than others, but I can tell you that, every time, he feels better about himself and his power over the OCD when he's able, with or without our help, to conquer the desire to avoid and see a task through to its completion.

 

I think a good therapist might be your best resource for addressing avoidance behaviors in a younger child. It is an ever-changing landscape, and while you don't want to traumatize him, if he continues to avoid, what he avoids might only become a bigger obstacle to him in the long run. B)

 

 

Good post. After a lot of work, we also are pretty aggressive about avoidance. But it took us a long time to get to that point - she is only 8, but has been working off and on for almost 2 years on the tools. Now, we try really hard not to give up any ground that we have gained, even when she really doesn't want to do it. She has learned from hard experience that it just gets harder, so we rarely do "baby-steps" anymore about avoidance. She just has to go do it. She is pretty aggressive with herself now. She might go into something crying (if in an episode), but you can hear her telling the stupid worryman to quit bothering her, that he can't stop her from doing what she wants. We tend to ask just one question now as a reminder not to avoid "What does Meggie want to do - and what is OCD telling you to do"? Then she gets that little look of determination on her face and off she goes. Took a long time to get there, and I am sure we'll still backslide if she has a true exacerbation again. We are really praying that abx and Pred will keep us away from that place again.

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Our son also had the inflexibility and the "ODD-style" defiance. Only things that diminished this were IVIG and high-dose augmentin XR.

 

Personally, I think this is what distinguishes PANDAS OCD from "classic" OCD. As others have mentioned, PANDAS kids don't recognize their requests or rigidities as odd; their behavior seems rational and to "make sense" to them. Sammy Maloney has mentioned this during 2 of the interviews he's done - says he doesn't remember much about his illness but that the behaviors all "made sense" to him at the time.

 

I think this is why PANDAS completely baffles many psychiatrists / psychologists. The last child psychiatrist we saw (when things were still rough before we started the high-dose XR) just shook his head and said that our son didn't resemble any case of OCD or OCD patterns of thought with which he was familiar. He didn't want to try any meds - considered it too risky - and thought it might be some form of generalized anxiety disorder (but definitely not PANDAS... sigh). He was a nice guy, but his only real advice was "go to Mayo Clinic."

 

Our psychologist (who specializes in OCD and anxiety disorders) has also been stymied by our son: thought it was OCD but "not typical" and was unable to make any progress with CBT/ERP therapies. We believe that the autoimmune attack on the basal ganglia creates a different beast: it resembles classic OCD or Tourette's but doesn't respond to drugs or therapy the same way (definitely didn't for our son).

 

I know some here have had good luck with CBT/ERP, especially when their children were not in exacerbation. Definitely worth a shot, and we all have to try whatever we can to help our kids. But - for us - the classic OCD / ODD strategies haven't worked very often, or very well.

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The psychologist told me my son's OCD had different characteristics from classic OCD as well. I actually found this very reassuring and I thought helped "prove" to those who told me it was classic OCD, possible bipolar,etc that it wasn't. The only reason I really continued to meet with the psychologist once a month was to have her offically put it in my son's med records that he was getting better w/o SSRI's and w/o CBT and to show how he was shedding the remaining problems. In the future, I didn't want anyone to say that I was seeing the improvement through "mommy eyes" and making things up.

 

 

 

 

Our son also had the inflexibility and the "ODD-style" defiance. Only things that diminished this were IVIG and high-dose augmentin XR.

 

Personally, I think this is what distinguishes PANDAS OCD from "classic" OCD. As others have mentioned, PANDAS kids don't recognize their requests or rigidities as odd; their behavior seems rational and to "make sense" to them. Sammy Maloney has mentioned this during 2 of the interviews he's done - says he doesn't remember much about his illness but that the behaviors all "made sense" to him at the time.

 

I think this is why PANDAS completely baffles many psychiatrists / psychologists. The last child psychiatrist we saw (when things were still rough before we started the high-dose XR) just shook his head and said that our son didn't resemble any case of OCD or OCD patterns of thought with which he was familiar. He didn't want to try any meds - considered it too risky - and thought it might be some form of generalized anxiety disorder (but definitely not PANDAS... sigh). He was a nice guy, but his only real advice was "go to Mayo Clinic."

 

Our psychologist (who specializes in OCD and anxiety disorders) has also been stymied by our son: thought it was OCD but "not typical" and was unable to make any progress with CBT/ERP therapies. We believe that the autoimmune attack on the basal ganglia creates a different beast: it resembles classic OCD or Tourette's but doesn't respond to drugs or therapy the same way (definitely didn't for our son).

 

I know some here have had good luck with CBT/ERP, especially when their children were not in exacerbation. Definitely worth a shot, and we all have to try whatever we can to help our kids. But - for us - the classic OCD / ODD strategies haven't worked very often, or very well.

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