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does anyone have any insights for me?

 

my son has some issues with cognitive inflexibilty, most likely 'just right' OCD without seeming ties to other trauma that may occur if something isn't right. . . just that it's not right and that's problematic in and of itself.

 

so, tonight here's our scene. . . we're on vacation at a cabin at nana's....boys have been watching a show before bed --- we don't do that at home. so tonight after dinner i say, "you must cooperate with everything papa asks you to get ready for bed if you want to watch that show." a shower was on the agenda. he has had trouble with bathing in the past during exacerbation. this is not that, something different. so when it's time to shower, he refuses. "i'll do it second thing tomorrow morning." a common delay, although he does actually often follow through with that type of thing if he says it. so he's not cooperative, so it's to bed without show.

 

not really a tantrum but not pleasant . so he's says the problem is that it will take too long to take a shower and they might not be able to watch the whole show. like a tantrum doesn't take up time?! we weren't on any time schedule, it was shower, then show, then bed. no one said anything about not finishing the show. when brother gets out of shower and ds is worried bro will get to watch without him, he decides to be cooperative. comes upstairs, takes shower. . . albeit not happily, but cooperatively.

 

if you were watching these scenes from the outside -- like his teacher last year -- you'd likely think he's just being defiant b/c he wants his own way and is a brat. however, i believe it's deeper than that. and he doesn't actually get his way from behaving like that.

 

obviously, if you're worried about time, the smart thing would be to cooperate, get through what you need to and go on to what you want. as i write this, it sounds more like 'normal' child stuff, but it's not, it's some OCD, cognitive thing. any hints and thoughts for me? thanks.

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does anyone have any insights for me?

 

my son has some issues with cognitive inflexibilty, most likely 'just right' OCD without seeming ties to other trauma that may occur if something isn't right. . . just that it's not right and that's problematic in and of itself.

 

so, tonight here's our scene. . . we're on vacation at a cabin at nana's....boys have been watching a show before bed --- we don't do that at home. so tonight after dinner i say, "you must cooperate with everything papa asks you to get ready for bed if you want to watch that show." a shower was on the agenda. he has had trouble with bathing in the past during exacerbation. this is not that, something different. so when it's time to shower, he refuses. "i'll do it second thing tomorrow morning." a common delay, although he does actually often follow through with that type of thing if he says it. so he's not cooperative, so it's to bed without show.

 

not really a tantrum but not pleasant . so he's says the problem is that it will take too long to take a shower and they might not be able to watch the whole show. like a tantrum doesn't take up time?! we weren't on any time schedule, it was shower, then show, then bed. no one said anything about not finishing the show. when brother gets out of shower and ds is worried bro will get to watch without him, he decides to be cooperative. comes upstairs, takes shower. . . albeit not happily, but cooperatively.

 

if you were watching these scenes from the outside -- like his teacher last year -- you'd likely think he's just being defiant b/c he wants his own way and is a brat. however, i believe it's deeper than that. and he doesn't actually get his way from behaving like that.

 

obviously, if you're worried about time, the smart thing would be to cooperate, get through what you need to and go on to what you want. as i write this, it sounds more like 'normal' child stuff, but it's not, it's some OCD, cognitive thing. any hints and thoughts for me? thanks.

Hi SmartyJones! Remind me how old your son is? It could be just the age. I can totally relate to that situation, and I can tell you my older kids would realize it's quicker to cooperate, but the younger ones would do exactly what your son did. So, there might be some OCD or other issues involved, but I see this happen with my younger kids ALL the time. It's like they have to go throught it a million times before it clicks and they realize the fastest way to get to watch the show is to cooperate. And, it takes consistency. A friend of mine gave me this analogy, and it may not apply to you, but it definitely applied to me back then (and it still does when I'm tired!). They do this experiment with monkeys: monkey pushes button, gets no banana, monkey pushes button, gets no banana, monkey pushes button, gets no banana, (lets say 30 times, no banana) then the 31st time, he gets a banana. That one banana is enough to keep the monkey pressing that button another 100 times! So, please don't get me wrong, I am not making any assumptions here, but I thought I would offer that to illustrate how our little kids "monkey brains" work sometimes!

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Oh Smarty, we have SO lived that scene over and over again in our house! It would be funny if it didn't eat up massive amounts of everyone's time . . . not just DS's. In our experience, it's OCD, all right. And it's probably born of a combination of your DS's natural intellect and his "just right" OCD; he's got enough of both operating to where some of the behavior and rationalization can actually sort of mask itself as "normal childhood defiance," but not being able to 100% control time and how it's arranged and how it's spent can be a MAJOR anxiety trigger for some kids . . . it certainly has been for ours.

 

In the height of an OCD period, our DS seems to think that the clock will stand still for him; this has not changed between age 6 and age 13. Even when we remind him repeatedly that his meltdown or his arguing or his avoiding is just eating up time itself and that "Time waits for no man," he cannot seem to help himself. The only thing that's changed in that scenario over the years is the strength and savvy of his debating skills. The boy can now debate the ears off a rabbit, I kid you not! :P

 

Then, of course, he becomes upset because we do not give in to him so he runs out of time one way or another, and bedtime for us is immovable because the one thing we don't need to add to the mix is lack of sleep! So he comes to his "regular senses" out of his "OCD senses" too little and too late sometimes, only to realize that now he's got absolutely no time left for playing or reading or whatever before bed.

 

Age can be a factor in this; he really may be too young to fully grasp the consequences. But you might try a few things and see how he responds.

 

1) When he begins to argue or try to bargain with you, take out a stop watch or a timer and keep track of how much time he spends indulging in that activity. Make sure he knows you're keeping track, and if he keeps dragging it out, give him periodic notices: "Wow! 5 minutes has already gone by! You could've had your teeth brushed by now!" Once the meltdown or arguement has drawn to a close, let him know how much time the whole episode took and try equating it to something that would be meaningful to him, like "You could've watched an entire 'Mythbusters' episode in the time it took us to get through this! Maybe you can make a different choice next time." I can't lead you down a primrose path and tell you that this has any kind of immediate, magical impact on their behavior or perspective, but it does seem to have given him a foundation over time. Now that he's better, he'll actually stop himself mid-debate and say, "I'm just gonna get this over with so then I can go play before bed."

 

2) We're learning increasingly not to engage in arguments, debates or negotiations with our DS's OCD; in other words, when it's clear that he's operating from that "side of his brain," we try to disengage. So long as he's not harming himself or one of us, he can go in his room and melt down and waste as much time as he likes, but we're not giving up the next hour of OUR lives to the OCD. We're going to continue to do whatever (watch TV, read the forum, etc.), and when his time's up because he has to take a shower or go to bed or whatever, then time's up. Generally, not receiving input or "food" from us to keep the meltdown or debate going, he tends to wind down much faster. In this way, too, the OCD behavior looks more like a typical kid's behavior in which some of the tantrums appear to be bids for attention.

 

Overall, an ability to literally control time has almost always been a major OCD trigger for our DS, perhaps as a result of his struggles to complete tasks in the alloted time while OCD thoughts swirl around in his head.

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My son is 8 and he doesn't present and those moments of inflexibility that you describe are very common here too. We have had the exact same thing over a show and shower. It very much looks to someone on the outside just like a bratty child but I suspect just as you do that it's beyond that for my normally mild mannered son. He just gets stuck on what he is saying and can't see past it. I hadn't thought of it as an ocd thing but now I can see how it could be for my son. He too is very time fixated.

 

Mati's mom... that is a good point and definitely something that becomes hard to navigate through.. what is a controlled/learned behavior and what is beyond their control.. although I feel like a certain tone comes over my son when he gets like this... as if he's in a different place when acting this way.......I feel like it's like he knows he's not being logical but can't do anything about it.

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Oh Smarty, we have SO lived that scene over and over again in our house! It would be funny if it didn't eat up massive amounts of everyone's time . . . not just DS's. In our experience, it's OCD, all right. And it's probably born of a combination of your DS's natural intellect and his "just right" OCD; he's got enough of both operating to where some of the behavior and rationalization can actually sort of mask itself as "normal childhood defiance," but not being able to 100% control time and how it's arranged and how it's spent can be a MAJOR anxiety trigger for some kids . . . it certainly has been for ours.

 

In the height of an OCD period, our DS seems to think that the clock will stand still for him; this has not changed between age 6 and age 13. Even when we remind him repeatedly that his meltdown or his arguing or his avoiding is just eating up time itself and that "Time waits for no man," he cannot seem to help himself. The only thing that's changed in that scenario over the years is the strength and savvy of his debating skills. The boy can now debate the ears off a rabbit, I kid you not! :P

 

Then, of course, he becomes upset because we do not give in to him so he runs out of time one way or another, and bedtime for us is immovable because the one thing we don't need to add to the mix is lack of sleep! So he comes to his "regular senses" out of his "OCD senses" too little and too late sometimes, only to realize that now he's got absolutely no time left for playing or reading or whatever before bed.

 

Age can be a factor in this; he really may be too young to fully grasp the consequences. But you might try a few things and see how he responds.

 

1) When he begins to argue or try to bargain with you, take out a stop watch or a timer and keep track of how much time he spends indulging in that activity. Make sure he knows you're keeping track, and if he keeps dragging it out, give him periodic notices: "Wow! 5 minutes has already gone by! You could've had your teeth brushed by now!" Once the meltdown or arguement has drawn to a close, let him know how much time the whole episode took and try equating it to something that would be meaningful to him, like "You could've watched an entire 'Mythbusters' episode in the time it took us to get through this! Maybe you can make a different choice next time." I can't lead you down a primrose path and tell you that this has any kind of immediate, magical impact on their behavior or perspective, but it does seem to have given him a foundation over time. Now that he's better, he'll actually stop himself mid-debate and say, "I'm just gonna get this over with so then I can go play before bed."

 

2) We're learning increasingly not to engage in arguments, debates or negotiations with our DS's OCD; in other words, when it's clear that he's operating from that "side of his brain," we try to disengage. So long as he's not harming himself or one of us, he can go in his room and melt down and waste as much time as he likes, but we're not giving up the next hour of OUR lives to the OCD. We're going to continue to do whatever (watch TV, read the forum, etc.), and when his time's up because he has to take a shower or go to bed or whatever, then time's up. Generally, not receiving input or "food" from us to keep the meltdown or debate going, he tends to wind down much faster. In this way, too, the OCD behavior looks more like a typical kid's behavior in which some of the tantrums appear to be bids for attention.

 

Overall, an ability to literally control time has almost always been a major OCD trigger for our DS, perhaps as a result of his struggles to complete tasks in the alloted time while OCD thoughts swirl around in his head.

 

Nancy - you always have great ideas. I especially agree with #2 - It took me a while to figure that out.... but it has really calmed things down for us!

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I have a 9 year old son (non-PANDAS). He will BEG me to wait to shower until after the show or BEG me to wait until morning. Even at 9 he doesn't get he's wasting time fighting with me. He doesn't have meltdown but he will freak out a bit, especially if it's his favorite show or a new episode.

 

So, that's the age answer, as for the PANDAS answer, it could be a mix of age and PANDAS. He begins with reacting like a typical 8 year old but then takes it to another level. His routine was off which can be devastating for a child with OCD. Then a child with OCD may have thoughts that they MUST finish the show. The anxiety associated with the mere though of missing it is unbearable. He also had the excitement of being at his grandparents. Honestly, there was a lot going on and I would probably give him another chance before seeing it as a seback. Just too many factors in the mix.

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oh Smarty-

 

I was thinking about posting today. We are having similar scale issues, over different things.

 

My older dd had been doing fantastic post pex. Then the loss of two teeth set her into an exacerbation that was calmed with a low dose of steroids. All of her really big, life interfering issues disappeared. BUT- we are left with this oppositional/defiance/temper tantrumy/explosive thing- which for the most part I think is rooted somewhere (although i cannot always see where) in ocd. It is really difficult to deal with, because for the most part she is great. School is going well, she is eating, sleeping (well, with melatonin), bathing, etc. BUT we have one MAJOR blow-up every afternoon/evening.

 

I will tell you that I KNOW it is pandas. We are lucky enough to have had her healthy for her first 8.5 years, and then again a fairly full remission this summer- we NEVER have issues like this when she is well.

 

So- for example- this was the issue last night. She thought of a project she wanted to do and was all excited about it. Then she couldn't find her old binder- which was an integral part of the plan. So what happens is she gets extremely upset- WAY out of proportion to the event. She ends up hitting me or her sister, yelling, throwing something because she is so mad. Then (and this is the part of the ocd I know about) when she gets reprimanded and/or sent to her room (or whatever)- she loses it. I know that ocd tells her something like- "when she gets in trouble, everyone hates her and/or no one will forgive her, so she should do another bad thing (I guess to deserve it?)". She did explain this to me recently- doesn't know why but she feels she has to...

 

We have been navigating this for a couple of weeks now- it is draining. I so know the other poster's feelings when they say they don't like spending time with their kids. Right now, it is really tough with her because I am walking on eggshells- and if you look only on the surface, the issues just make her seem like a spoiled brat- but at least I do know, that is not what it is- and although I don't/can't let it slide- I do try to treat it differently. Last night I tried my best to use my best "psychologist" personality, stay calm, and engage as little as possible- while also trying to help distract or divert. It was A LOT of work for me- but we did have a much better outcome. The repeating technique of yours- is a huge help. I stayed totally calm and cool- as MOM said- I didn't engage in any discussion (she wanted to go to the store immediately for a binder- I said no once- then reminded her of that once- then repeated)- while all of this calmness and technique did not totally solve the situation, it did diffuse it- and I didn't end up getting emotionally exhausted from reacting to her, and she didn't end up in her room for the night.

 

I am also interested in insights from other parents, thoughts on techniques and/or possibly supplements that could help us here.

 

After pex, this sort of thing slowly resolved- so I am hoping it will soon. I am doubling the zithromax, and dosing with motrin for the whole weekend- to see if we see a difference.

 

Ugh!

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Did a long post on this last night and then lost it :(. SO frustrating! I am a little OCD about my posts :).

 

Control - over time, situation, order, etc is such a common OCD trait. I like the monkey brain analogy! OCDmom - those are all great points.

 

We try to think of Meg's brain (when having OCD) as being in need of training. Just like a stroke victim needs to teach a different part of their brain to work a leg, an OCD victim can learn to have another part of their brain control the anxiety area. We have also tried keeping track of the time she "wastes" tantruming, but this seems to dial up her anxiety in the moment. We will talk about this part the next day when we recap what happened & what we could all have done differently (an important step that is now a part of our daily lives, even when we have no OCD). But we can't use this as a tool to manage a situation in the moment. We do use "not engaging" as a tool (love that one for my husband as well!).

 

One idea is to invest in a cheap egg timer. Talk about this ahead of time - how for everyone, some things seem to waste time, but they really go by very quickly if we focus, and that then we can get to the fun parts. Use something you hate to do as the example, and use the egg time for yourself as well (to model the behavior). Time a shower, just for fun. I would guess that it is about 5 minutes, plus another 5 minutes to get read after (dry, jammies, brush hair, teeth). In this situation, we would "accomodate" without her knowing it, by having everything organized for her, so that no extra frustration is introduced. More work for you - but worth it. Once we time it once, then we introduce the concept of using the timer to realize that we have plenty of time to get ready. Say that you will not turn on the movie for 20 minutes. Remind him that he has more than double the time he needs, and if he is ready, you'll do tickle time or read a book together in the extra 10 mintues. DONT turn the TV on early - the point is to train his brain in how SHORT the getting ready part is - that even if slow, there is still extra time. So be sure that the getting ready time is at least 10 minutes longer than he really needs.

 

Then use the time in short increments of 5 minutes. Say things at each bell (get a quiet one, not a jarring one) "wonderful, you have only taken 5 minutes and you are already done washing your hair. You are doing great tonight. We should have at least one minute of tickle time". Then if you have more at the end, say "wow, you did even better than I expected, we can read for 3 minutes AND do tickle time!!!" Try to keep this from rushing the child - your voice needs to stay positive the entire time (SO HARD!!!), so keep looking for the positives. If it fails, say things like "wow, you tried so hard tonight. Thank you for working with me as a team. This is like learning to play the piano, no one is great the first day! We'll keep practicing together. Isn't it nice to be done now? Let's go watch our movie." Sometimes this is hard to say when the time together is tough, but it takes a lot of the anxiety out, if they feel you understand and are working with them towards a goal.

 

If this does not work, tell us more about the situation and what is working and what is not, and we'll all try to come up with more ideas. This board has so many experts on OCD now - including you! I'm always learning - and there is always a new way to approach each child. It is a creative experience to learn to parent a child with OCD. And if this is "just an age thing", then tools like this will still help them to mature, and give them tools to deal with frustration - something that helps me as well.

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I've noticed this with my ds too. I think that the part of the brain responsible for exectutive funtion must be responsible (and effected by pandas). DS is irrational over simple things,things I know he understands. He sometimes cannot behave rationally, do what makes sense, to acheive his goal. It comes and goes - but its much worse when he is tired or hungry...unfortunately, when he is tired and hungry, I'm usually tired and hungry too!

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It comes and goes - but its much worse when he is tired or hungry...unfortunately, when he is tired and hungry, I'm usually tired and hungry too!

 

Yes! So glad you brought this up! We are only just beginning to recognize a pattern with our DS related to how long he's gone without food! Is it blood sugar, you think? He is at his most vulnerable when he's said, "I'm hungry," but dinner is another 15 or 20 minutes from being ready. Always needs a snack when he gets home from school, too, or homework is an absolute "no go." We've taken to keeping Cliff bars around!

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We carried peanut butter crackers and bags of Kashi Crunch (carb & protein) around all the time & if she even looked sideways I'd throw one at her!!! It was like a food emergency! I had her tested for blood sugar issues, diabetes - nothing came up. I KNOW that food was part of it. At the worst, when she woke up, I would already be by her bedside, with a meal ready to go (tiny bites, as she could not face large amounts of food). If I was off schedule, there was heck to pay. One wierd thing, was that she would never know that she was hungry - she just felt wrong.

 

What is that!!! Meg also got stomach ache at onset, that turned into ulcers. I wonder if it is possible that PANDAS somehow triggers excess acid - and that the acid might actually process food too quickly?

 

Now that she is healthy, food and sleep is still important - but not to the level of crisis management that it was in an exacerbation.

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What is that!!! Meg also got stomach ache at onset, that turned into ulcers. I wonder if it is possible that PANDAS somehow triggers excess acid - and that the acid might actually process food too quickly?

 

 

That's an interesting thought . . . the excess stomach acid. My DS has always LOVED pasta with tomato sauce and pizza, but, especially when the exacerbation was at its height, he got concerned that eating either would "bother his stomach" and he took to asking if he could have a Tums before we even sat down to a dinner with either of those on the menu!

 

Doesn't anxiety churn up stomach acid? Maybe that's why PANDAS seems to bring it up as an issue, too.

 

But I'm curious about Meg's ulcers. I thought that it's now known that ulcers are caused by bacteria, rather than by "stress" or even excess acid?! Or, like most things in life, is it actually a combination or "perfect storm" of conditions?

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What is that!!! Meg also got stomach ache at onset, that turned into ulcers. I wonder if it is possible that PANDAS somehow triggers excess acid - and that the acid might actually process food too quickly?

 

 

That's an interesting thought . . . the excess stomach acid. My DS has always LOVED pasta with tomato sauce and pizza, but, especially when the exacerbation was at its height, he got concerned that eating either would "bother his stomach" and he took to asking if he could have a Tums before we even sat down to a dinner with either of those on the menu!

 

Doesn't anxiety churn up stomach acid? Maybe that's why PANDAS seems to bring it up as an issue, too.

 

But I'm curious about Meg's ulcers. I thought that it's now known that ulcers are caused by bacteria, rather than by "stress" or even excess acid?! Or, like most things in life, is it actually a combination or "perfect storm" of conditions?

 

That is interesting. I hear a lot about stomach sensitivity, but not the cause.

 

I really don't think it's stress - the stomach issues started immediately with the PANDAS symptoms - and were severe enough to cause multiple ulcers in a 6 year old. I had a lot of docs say stress, but after a lot of research, that seems to be one of those legends that are not really based in fact (although I do think stress can increase any issue). We did an endoscope for her (and tested for celiac) but did not find H Pylori. We are now working with a gastro in DC and may do another scope, as the stomach acid issue is still there - she takes Prevacid daily, but in a minor blip, the acid breaks through & she tastes metal or throw up in her mouth, and has a stomach ache. We deal with it, but it seems wrong. We did a LOT of therapy to learn to identify and describe the actual physical symptoms. Her OCD also centered around throwing up, and the ulcers were clearing reinforcing that constantly. I'll be interested to see if this new doc can find what is causing the stomach ulcers, as I worry a lot that this gut issue might be what allows the opening in the bbb. As a side note, we found the stomach ulcers 2 weeks before we started abx, so that was not related. She now takes a probiotic. We only use Motrin when it is urgent, due to this issue. Ideas welcome (sorry to hijack your thread, smartyjones!!!)

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We carried peanut butter crackers and bags of Kashi Crunch (carb & protein) around all the time & if she even looked sideways I'd throw one at her!!! It was like a food emergency! I had her tested for blood sugar issues, diabetes - nothing came up. I KNOW that food was part of it. At the worst, when she woke up, I would already be by her bedside, with a meal ready to go (tiny bites, as she could not face large amounts of food). If I was off schedule, there was heck to pay. One wierd thing, was that she would never know that she was hungry - she just felt wrong.

 

What is that!!! Meg also got stomach ache at onset, that turned into ulcers. I wonder if it is possible that PANDAS somehow triggers excess acid - and that the acid might actually process food too quickly?

 

Now that she is healthy, food and sleep is still important - but not to the level of crisis management that it was in an exacerbation.

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megs mom-

You should email Dr. K. When I was in chicago we had coffee, and he mentioned working on anxiety in teens (primarily girls) that interestingly enough, often (always) involved stomach issues. We are not talking about pandas - just anxiety - I'm sure he could point you in right direction, he's been investigating the stomach anxiety link in terms of bacterial involvement.

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