PANDAS and ODD

[jrjunction]

Anyone have experience with ODD and PANDAS? We are really strugglling with ODD with our 8yo ds. Wondering what this looks like in other PANDAS kids.

Thank you

Marcy

[Hrosenkrantz]

My 8 year old PANS son also has oppositional behaviour. I'd be interested in seeing a discussion of this -- its hard for me to tell where the PANS and 8 year old boy mischief/obnoxiousness begins.

 

It's easier for me to see how a PANS flare impacts him in other areas -- language for instance (his language skills are impacted by flares and where he is in treatment). Or impulse control, raging, even sensory issues.

But when his behavour is oppositional, its hard for me to truly identify these as PANS symptoms -- I just don't know.

[BeeRae22]

My dd (8) has had odd behaviors on and off since her PANS symptoms started in October... It's taken this long for me to determine the difference between ODD issues and normal "bratty kid" behavior and even now, it can be had to tell sometimes! If your son didn't have these behaviors prior to pandas/pans symptoms than it's easier to tell I think. If in the past you were able to talk to him or reason with him in a certain situation, but you can't now, I would call it odd. Now that my dd is seeing improvement from her new abx, most of her odd behaviors have dissipated, but she does have them when stressed or tired. It's different than normal "kid stuff"-- my dd can be incredibly nasty-- hitting, scratching, running away, mean words and faces.

 

In the moment it can be hard to make the sane and rational differentiation, and many times I find myself in a power struggle with her (and an argument!) that I later realize was beyond her control to reason out. (And beyond my control as well!! But even moms are human, and even moms of healthy kids can make the wrong judgements about behaviors and handling them, so I (try!) to not be too had on myself when it comes to dealing with it. ODD is hard. It "looks like" and "starts as" bratty-pants behavior and very quickly turns into something very different. I guess even those very experienced with this still struggle with it at times, because even the most patient and understanding and loving parents can underestimate the level of frustration that can build on both sides of ODD. The good news with PANDAS/PANS though, IMHO is that when you (finally) hit on the right treatment plan, ODD can eventually be resolved and become a thing of the past

[airial95]

My son was very young at onset, only 19 months old, so differentiating between ODD/OCD and typical "terrible 2's" behavior was always a challenge.

 

But one of the things we noticed particularly about the ODD was almost a compulsion to disagree or do the opposite of what he was asked. A good example of this would be simply choosing what cup he wanted to use with for his drink - if you would ask him if he wanted the red or blue cup, he simply couldn't make a choice, not because the choice was difficult, because we were asking him to make a choice. If you asked him directly if he wanted the red - no, okay then the blue - no. The over-riding answer was always no.

 

My son is 6 now, and has a better understanding of how his PANDAS affects him than I could imagine for his age, he has since described to me how hard it is to do things he's asked to do, even when it's something he WANTS to do. To go back to my cup example, he would tell me that he would really want the red cup all along, but because I was asking him if he wanted it - he "had to" answer "no."

 

Not sure if that helps, but it helped us to understand it better.

[pr40]

just on the question of how to distinguish "normal" from "Pandas" behavior. I thought a lot about this,

and the only way I can describe it is that PANDAS is just the same as normal in the type of behavior, i.e. what kids do. But it is different in how it is done -- they do it compulsively. So, all kids are more likely to say "no" than "yes" when asked by their parents, but PANDAS kids say "no" compulsively.

All kids get on all fours and imitate animal sounds, but PANDAS kids can do it again and again for days on end.

I have hard time explain this even to my wife who keeps saying, look, all kids do x. Indeed, "normal" kids to it too but they don't do it compulsively, over and over again. the same with ODD -- O should stand not only for oppositional but also for obsessional (i.e., compulsive) when PANDAS kids are concerned. an OODD.

Edited July 8, 2014 by pr40

[airial95]

It is always hard to distinguish, especially when they're young because so many typical PANDAS-y behaviors are considered "developmentally appropriate". Like I said, our son was only 2, so people tended to dismiss his issues as being "normal", a "phase", or just a bad case of the "terrible 2's". However, we knew (and fortunately our wonderful pediatrician and day care director did too), that it was far more than that. It was like his "terrible 2's" were on anabolic steroids!

 

We developed a "test" early on to distinguish what we called "PANDAS vs. punk" behavior (ok, it was more like a coping mechanism - but hey, you have to do what you can to survive). I wasn't proud of it at first, because it went against EVERYTHING I believed in as a parent, but it worked. And eventually we shared the technique with one of our behavior therapists and she thought it was great and started sharing it with other parents.

 

We called it the "wanna cookie" test. (My son was young remember). When he would start to have these uncontrollable rages and outbursts, we would offer him a cookie (or candy, ice cream, toy...whatever was getting his attention at the time) if he would settle down and do as he was told. I know, horrible parenting - BUT - what we noticed, is that when it was truly a PANDAS issue, the offer went completely unnoticed - he didn't care. When it was just age appropriate nonsense, he acknowledged that we were talking treats. Sounds silly, but it helped immensely. Based on that we were able to detect other signs of it being PANDAS behavior (dilated pupils, excessive drooling) that we could use in the future.

 

I know, offering your kid a reward to stop unacceptable behavior should have my parenting cared revoked, but it actually worked.

 

We still use it now that he's older, but instead of a reward it may be losing a privilege like screen time. If he protests the restriction, we know he's just being a punk, if he doesn't care one whit - we know its something more going on.

[Rachel]

You guys never cease to amaze me. I always thought OCD was severe unusual behaviors but I am beginning to see some I guess mild OCD things in my son. Like having a hard time making a decision, wanting things to be extremely organized, a voice that fads in and out, words with the wrong sound, but these things have just gradually started happening in the last 3 to 4 years. I never saw this change overnight.

[BeeRae22]

It is always hard to distinguish, especially when they're young because so many typical PANDAS-y behaviors are considered "developmentally appropriate". Like I said, our son was only 2, so people tended to dismiss his issues as being "normal", a "phase", or just a bad case of the "terrible 2's". However, we knew (and fortunately our wonderful pediatrician and day care director did too), that it was far more than that. It was like his "terrible 2's" were on anabolic steroids!

 

We developed a "test" early on to distinguish what we called "PANDAS vs. punk" behavior (ok, it was more like a coping mechanism - but hey, you have to do what you can to survive). I wasn't proud of it at first, because it went against EVERYTHING I believed in as a parent, but it worked. And eventually we shared the technique with one of our behavior therapists and she thought it was great and started sharing it with other parents.

 

We called it the "wanna cookie" test. (My son was young remember). When he would start to have these uncontrollable rages and outbursts, we would offer him a cookie (or candy, ice cream, toy...whatever was getting his attention at the time) if he would settle down and do as he was told. I know, horrible parenting - BUT - what we noticed, is that when it was truly a PANDAS issue, the offer went completely unnoticed - he didn't care. When it was just age appropriate nonsense, he acknowledged that we were talking treats. Sounds silly, but it helped immensely. Based on that we were able to detect other signs of it being PANDAS behavior (dilated pupils, excessive drooling) that we could use in the future.

 

I know, offering your kid a reward to stop unacceptable behavior should have my parenting cared revoked, but it actually worked.

 

We still use it now that he's older, but instead of a reward it may be losing a privilege like screen time. If he protests the restriction, we know he's just being a punk, if he doesn't care one whit - we know its something more going on.

 

 

You're so right, and I have done the same thing with my dd.... Nothing wrong with rewards or treats for changing behaviors IMHO! Like your son, if my dd was having a pandas "moment" you could offer her a trip to Disney World and she couldn't help herself or her behaviors.... Same thing with punishments or taking things away, she just wouldn't care. She would just get even more angry, and would even seem to get mad about the offers of rewards.

[WorriedDADNMOM]

For us, our worst (middle) Pandas/Pans kiddo had adverse reaction to 1st MMR. This is when the uncontrolled crying started. It was almost as if things changed. From 2-5 she became very afraid irrationally about Santa, costumes, clowns, etc......As she matured, she became very ODD.....early on it was food aversion and just oppositional about just about anything. This went on from 2-6yo when some OCD that we did not realize....what 6 yo could walk down the stairs skipping a step and adding 6 to every step....6-12-18-24..etc...Then she was able to tell us about why all the Bath and Bodyworks soap was going missing. We still don't believe it, but it was very hard to get into her head....still is today. There was NO WAY to bribe, manipulate, entice, barter, dictate.....literally nothing worked. For food issues, chores, cleaning, literally everything. Time management was also a huge issue.

For us there was never any empathy for others.......almost always self centered. This was just the behavior stuff. Not even talking about tics, uncontrolled movements and psychological stuff.

 

Oldest dd got Pandas/Pans with severe fatigue from Strep and EBV....she became very anxious, sep anxiety....very strange but after about 6 months we nipped it quick compared to middle dd. She did not have any issues with ODD to any major extent.

 

Youngest dd definitely MMR 1 and MMR 2 reactions. Again, very minor OCD with more major ODD. Hers was more outbursts of anger and you could not rationalize or negotiate during those issues. Again we dealt with it from 2-5 then after 5 yo MMR2 we noticed slight tic (similar to middle DD) and again we nipped it very quickly.

 

Beerae22.....you are so right about nothing working.

 

For us, the diagnosis of pyrrole disorder was huge in terms of stress management. Debulking the infection with ABX and then supplementation of vitamins minerals and mood stabilizers and enahancers....all have been very key.

 

For Middle dd, she has blossomed into a beautiful 10yo. Still have issues? Absolutely......but she is so much happier, healthier, playful, social, capable with dealing with stress, conflict and problem solving or decision making....... you name it.......improved in every single area.

 

Hope this helps!!!! Thank you to everyone on this board!!!!! It truly has been a road map, and source of info and encouragement.