Just Right OCD?

[earnestfamily7]

I am getting confused about the Just Right OCD... our old psych said this is part of what DD7 has... but I never asked much about it at the time... this was all before we were on the PANDAS path with her.... So she is doing better in so many ways but to me it seems that this form of OCD is part of what causes her meltdowns... it seems like she has something in her head and when it doesnt play out to her plan then Bam- meltdown ensues....

 

For example,she is very concerned about getting to play with the girl across the street... she needs to play with her... and even if the girl has something else going on it causes meltdowns in DD. so... this evening when she went across the street to see if neighbor could play and she wasnt home... meltdown (good 20 min.... I tired to calm by saying we could go for a walk and they could play later or tomorrow... But the meltdown continued and morphed to include the walk as I said I would need to clean up dinner 1st....

 

I am very greatful that she is doing well on other levels and seems to be improving in many ways... but for my DH and I the meltdowns and rages are soooooo hard. He tends to think that it is behavioral and that it is not related to PANDAS... I tend to go the opposite and think that it is part of her OCD thinking.... How do you know what it is?!

[dcmom]

I have a few things to add....

 

First- my dh and I always have the disagreement that you are having about behavioral vs pandas. While I certainly agree you must have some expectations regarding behavoir, and try to calmly give the more reasonable way to think about things- I always think when my kids are really healthy- I never have these type of meltdowns.....

 

My dd has A LOT of just right ocd. For her it is more about her stuff, doing things a particular way, etc....

 

We do get the meltdowns around stuff that I don't really think is ocd- I hope someone can more eloquently state this analagy that I have heard her before (been wanting to share with dh)- it is something like our kids are like a glass of water, all day they have frustrations and stress (due to ocd) , this is more water being added to the glass. By the time they get home from school, their glass is full- so if one more thing goes wrong it spills over into a meltdown.

[thereishope]

Sometimes you don't know what it is. I had a lot of times when I said to myself "Is this PANDAS or is this just the way my son acts". OCD can be hard to stop even if it was originally triggered by PANDAS or PITAND. It's such a controlling, manipulative disorder.My son also had residual OCD we had to overcome. The way I would probably do it, is not to tackle everything at once. Pick one thing to overcome at a time and do it in baby steps.

[7upMom]

My 9 y/o son also went thru this with the neighbor boys. It was almost borderline stalking, but I truly don't think he could help it. He once went to the house early morning and knocked on their door for almost 45 minutes straight, he will go over to their house continually to check and see if they are home, or call repeatedly ( sometimes I don't even think they answer their phone anymore on purpose cause he is just so frustrating like that) but he would go into meltdowns if he couldn't do it. He was just so obsessed with playing with them. He is better about it now but we stay on top of him knowing this is how he is. I think it is a part of my son's ocd, he becomes stuck on things - making something, wanting to buy something, wanting to do something. He almost just "needs" to do it.

We try our best to manage it because if we give in all the time, I am sure it will turn into a behavioral thing also ( kids are too smart for it not too). I think for him sometimes it is his ocd and sometimes it is behavioral, and I agree telling the difference between the two is really hard!! we have set really clear limits for him and if he crosses a line of controlled fit to uncontrolled fit then he is done and not allowed to play with friends at all for the day. This is hard esp when it can set him off to a complete rage. Also though I have noticed with him, sometimes what starts off behaviorally can go into a pandas fit, only because he is lacking the maturity and ability to reason it thru. Although now since IVIG - we are two and a half weeks out and have not had a fit for 4 days straight that is a miracle here!!! ( :

BTW- we also did 4 years of behavioral therapy ( I believe in it ) but for these events it didn't work there was just no reasoning for him during these modes.

[Suzan]

I am getting confused about the Just Right OCD... our old psych said this is part of what DD7 has... but I never asked much about it at the time... this was all before we were on the PANDAS path with her.... So she is doing better in so many ways but to me it seems that this form of OCD is part of what causes her meltdowns... it seems like she has something in her head and when it doesnt play out to her plan then Bam- meltdown ensues....

 

For example,she is very concerned about getting to play with the girl across the street... she needs to play with her... and even if the girl has something else going on it causes meltdowns in DD. so... this evening when she went across the street to see if neighbor could play and she wasnt home... meltdown (good 20 min.... I tired to calm by saying we could go for a walk and they could play later or tomorrow... But the meltdown continued and morphed to include the walk as I said I would need to clean up dinner 1st....

 

I am very greatful that she is doing well on other levels and seems to be improving in many ways... but for my DH and I the meltdowns and rages are soooooo hard. He tends to think that it is behavioral and that it is not related to PANDAS... I tend to go the opposite and think that it is part of her OCD thinking.... How do you know what it is?!

 

We have a lot of just right OCD here and I have the hardest time understanding it and identifying it. I think I'm the slowest learner about all this! We have a similar thing going on with our neighbors though. My dd has to play with them. If she can't, she has no idea what to do and will want to call and call over there to find out what's going on. It's very hard to distract her with something else and she will complain to me ALL NIGHT about wanting to play with them. We are going through this tonight

 

Susan

[earnestfamily7]

My 9 y/o son also went thru this with the neighbor boys. It was almost borderline stalking, but I truly don't think he could help it. He once went to the house early morning and knocked on their door for almost 45 minutes straight, he will go over to their house continually to check and see if they are home, or call repeatedly ( sometimes I don't even think they answer their phone anymore on purpose cause he is just so frustrating like that) but he would go into meltdowns if he couldn't do it. He was just so obsessed with playing with them. He is better about it now but we stay on top of him knowing this is how he is. I think it is a part of my son's ocd, he becomes stuck on things - making something, wanting to buy something, wanting to do something. He almost just "needs" to do it.

We try our best to manage it because if we give in all the time, I am sure it will turn into a behavioral thing also ( kids are too smart for it not too). I think for him sometimes it is his ocd and sometimes it is behavioral, and I agree telling the difference between the two is really hard!! we have set really clear limits for him and if he crosses a line of controlled fit to uncontrolled fit then he is done and not allowed to play with friends at all for the day. This is hard esp when it can set him off to a complete rage. Also though I have noticed with him, sometimes what starts off behaviorally can go into a pandas fit, only because he is lacking the maturity and ability to reason it thru. Although now since IVIG - we are two and a half weeks out and have not had a fit for 4 days straight that is a miracle here!!! ( :

BTW- we also did 4 years of behavioral therapy ( I believe in it ) but for these events it didn't work there was just no reasoning for him during these modes.

 

 

I have often said that my DD acts like a stalker.... on the weekends she starts 1st thing in the morning... she watches out the window to see if she can tell if they are home. I put a rule in place that she may not call until 10:30... and she she can not knock until 11:30.... but this always leads to meltdown when she realizes it is just 8 am or earlier! She is already worried about school being out and her friend being in daycare while she is at home... she has the friends schedule memorized... If I knew another child obsessed about my child I think I would be concerned

 

I am gald to know that I am not the only one experiencing this. It is very frustrating.... Yesterday we tried to go to a city wide school art festival- a peice of her art work was selected (only 30pcs for 1st grade city wide... I am so proud) .... the whole family was so excited but she had a meltdown that lasted approx 2hours (because she couldnt bring the friend) and was upset that she had to leave the friend... they had been playing all day (approx 4 hours) ... we went... quickly saw her selection and went home.... all the while she was crying (no tears inside) but lots of whining and and pushing... once in the car - tears - screaming - yelling where back and continued until she was with the friend (my DH said let her go as he was tired of the yelling and didnt want a rage to surface. .... just another day controlled by a child with PANDAS..... I get so torn with what is right anf what is wrong as far as disipline.... if it really isnt their fault should we make her stay in the house ... and then the rational parent in me says I dont want to be controlled by a child.... rules... consequences.... it all gets so muddled!

[MomWithOCDSon]

We, too, have Just Right OCD in our house, and it is definitely worse when DS's overall PANDAS health is worse. That being said, perhaps because he's older and he was diagnosed with OCD long before he was diagnosed with PANDAS, we see that some age-appropriate behavioral interventions are helpful, if for no other reason than they help build skills and tools that can be at his disposal should there be a future exacerbation, or a similar circumstance.

 

Our local OCD Foundation web site has these terrific "Expert Perspective" articles about various aspects of OCD. For instance, despite having lived with it for years, I didn't realize that it was DS's OCD that was translating into "Obsessive Slowness." Once having read that article and sharing it with some of his teachers, etc., many things became clearer in terms of that particular behavior on his part. You might try "grazing" through some of this site to see if there's some information here that would helpful in terms of some gentle, age-appropriate interventions while you're in the process of getting the PANDAS health issues under control.

 

OCD Foundation of Chicago - Expert Perspectives

 

Again, either the behavior itself entirely, or at least the intensity of the behavior, subsides in our DS when he's responding to auto-immune therapy through abx, probiotics, anti-inflammatories, etc. But having this information on hand and in mind when those moments occur in which he's less in control of the OCD has been very helpful.

 

Good luck!

 

Nancy

[smartyjones]

.... So she is doing better in so many ways but to me it seems that this form of OCD is part of what causes her meltdowns... it seems like she has something in her head and when it doesnt play out to her plan then Bam- meltdown ensues....

 

IHe tends to think that it is behavioral and that it is not related to PANDAS... I tend to go the opposite and think that it is part of her OCD thinking.... How do you know what it is?!

 

 

earnest - my son, 5, has similar symptoms and it is so much worse when he is in exacerbation. in your tag line - i believe it to be a symptom, not defiance. but yes, for him, it totally presents as defiance. in fact, that is one of the reasons we have decided to change schools for him next year. i don't believe the teacher he would have would be able to step outside her beliefs to see that it's really not defiance but something deeper. we are working with the public school system and have a 'strategy plan' - a step below a 504 with a main tenant being that what may look plain and simple like defiance - is much more complicated.

 

i've posted many times here on that issue of what he has in his head is it - his way or the highway. one time he had a tantrum b/c it was time to come inside from playing. we had given time warnings, discussed the plan - 2 more hits, then clean up and come inside (or whatever). he wouldn't comply. in the end, it was because he had hit and only got to 2nd base and needed to come all the way home so he wouldn't be stuck on 2nd all night. now, that was one that at the end of the tantrum, we discovered. there's been others that we haven't been able to uncover.

 

you may want to search under cognitive inflexibility and see if you find anything useful in those old posts. yes, i find like you, that the lines of everything get very muddyed. what is ocd just right vs. cognitive inflexibility vs. just defiance?

 

overall, i think it's so much brain function that they really can't control. however, i do think we need to find coping strategies for them and us. i am a big advocate of the book 'the explosive child'. have you read posts about it? i think this is most helpful for me and how i react in the face of a tantrum rather than affecting change in how he acts or reacts. we find repeating his concerns when he is ramping up is very helpful in keeping the level down. sometimes, it simply refers it back to him and he realizes it doesn't really make any sense and then is able to move on.

[simplygina]

My son also has trouble with getting stuck on an idea and not being able to let it go. I never thought of it as a Just Right issue though. His Just Right OCD is having to do things over and over until they feel "just right", like touching things or opening and shutting things, etc. though I guess I can see how this would fit in with all of that.

 

Anyway, I read a great book called Magnificent Mind at Any Age by Daniel Amen and he talks about an "inflexible anterior singulate gyrus" in some people, especially those with OCD, though not everyone who has it has OCD. It is the gear shifter in our brains and for some people it just doesn't work well. He give information on behavioral and supplements that help that part of our brain work better. I realized that to some degree, everyone is our family has issues with it. My husband used to get very upset if things didn't go as he had planned in his mind. We missed a plane once and I had to take the kids to another terminal for a bit because he was beside himself. It was a full-on tantrum and I decided to deal with it like I would a toddler and remove the audience. I figured he could be upset, but if I wasn't there to "share" the tantrum, he would probably at least "tantrum" internally. I can't find the book right now, but I do remember he suggest GABA as one of the best supplements to help smooth transitions in the brain. I will try to track it down and see what else he suggests.

 

I approach it as both a physiological issue and a behavioral one because the way we act literally shapes and changes our brains. I know it can be dealt with because my husband is much better than he used to be because he has worked really hard on his inner dialogue and my son is dealing better with it as well. Telling my son that he is getting stuck will often help him work through it. I guess I kind of side with your husband on this one because I've also had to get tough on some things and tell him that I refuse to talk about it anymore because I can't, or won't change it and continuing to talk about it will upset me, then ignore any behavior that is related to it. I've had to go so far as to say that if he brings it up again it will absolutely NOT happen (he gets stuck on wanting to go to the store RIGHT NOW and get something he wants) and then follow through.

 

Once they pass a certain point I think they just have to wear themselves out so there is no point of reasoning with them any longer. It just seems to prolong and fuel it. My son once said, when he was about 6, that sometimes he just had to cry ALL the crying out before he could stop. So after that I would just ask him if he was having one of those times. If he indicated it was I would just tell him he would need to finish the crying in his room. Usually he was willing to do that.

 

He's 10 now and seems to be able to understand that his behavior is a choice and he can usually stop himself, though I can tell it is A LOT of effort for him sometimes. And other times I've just had to be the meanie and stick out him being really upset. We haven't had to deal with rages much for the past couple of years though, so it is easier than when he used to completely flip out. Now he is just more sad. But I do think that at least part of the reason he doesn't completely lose it anymore is that we've spent several years working on taking deep breaths and having him tell himself that he can handle it and he will be OK. And since we started abx, he doesn't seem quite as "stuck" as before.

 

good luck!

[7upMom]

... on the weekends she starts 1st thing in the morning... she watches out the window to see if she can tell if they are home. I put a rule in place that she may not call until 10:30... and she she can not knock until 11:30.... but this always leads to meltdown when she realizes it is just 8 am or earlier!

 

Never in a million years would I have thought I would have laughed about going thru this with my son ---but my husband and I just did- not out of rudeness but out of wow- familiarity- because this is exactly the same rule ( times and everything!!) we had here all last summer and weekends this whole year- and ditto for the days he rose early and just irritably watched the clock.

I don't even know if there is a right or wrong in any of this but just a matter of doing what works best for your family to get thru ( that took lots of trial and error here) !!!

[earnestfamily7]

Thanks for your input everyone... I shared your comments w/ DH and it does help us both to know that we are not the only family dealing with this stuff. I checked out the website on OCD... and I do have the book and have read almost 1/2... I bought it when things were very bad and it seemed I was too exhausted to read it. I just wasnt in a good place... but I will start on it again this week.

 

I know we are in a much better place than we were in Jan and Feb of this year. The antibiotics have helped tremendously... but I know there is still a road ahead of us on the cognitive inflexability and just right ocd stuff.... She is seeing a psychologist - we really like him - so I will try to get him on some stradegies.... up to this point we really have just been putting out the fires (more like infernos!) we see him again in 2weeks (in PANDAS time that is = to2 years the way things change) Hopefully she will continue to improve and be in a good place to actually implement strategies w/o worrying about causing meltdowns or rage...