PANDAS behavior or not?

[jdude]

My husband is tired of PANDAS being the excuse for every behavior of my son. He (the kid, not the husband) gets obsessed with doing something (say, X-box or the computer) and when we tell him it's time to get off, he acts very defiant. My husband thinks he's just being a pain in the a** but I think some of his inability to transition well is due to his PANDAS. He does much better with a warning, and some reminders (i.e. you need to get off in 10 minutes...five minutes), where my husband just says "get off now" and turn the thing off which results in a meltdown.

 

LAst spring when he started this constant potty talk I didn't attribute it to PANDAS as his friends seemed to be joining in quite a bit (maybe they were following his lead), but then he stopped and it started back up again when other OCD behaviors came creeping back, so now I'm thinking it is related.

 

Then yesterday my son started making a weird noise with his mouth, I quickly turned around and he looked at me saying "what are you looking at, I'm recording sound effects for my DS game" (where he can draw an animated cartoon). I'm starting to think I'm going crazy, and maybe it doesn't matter, except when I'm keeping track of symptoms and flare-ups, it's hard to say what is just due to being stubborn, or a kid, and what is PANDAS related. The typical OCD behaviors are easily identified, however, the defiant behavioral attitude is a little trickier to pinpoint.

[JJMom39]

I can't answer whether or not the defiant behavioral attitude is for sure PANDAS related, but I can tell you that my ds has the same issue. It mostly comes out when he has to stop playing a video or computer game. Not being allowed to continue or not having time to transition will set off a major battle or meltdown. I think of this as related to his PANDAS for sure, although he is this way all the time, not just during an exacerbation. There are symptoms that for him never clear, like this defiance and the cognitive inflexibility. My non-PANDAS ds might have some issue with being told to stop playing a game, but his reaction does not come close to the behavior of my PANDAS ds.

[Malke]

My daughter's biggest issue is around emotional outbursts and really rude language, not just potty mouth. I often tell her that I can tell which are her hard days and which are not, and that there are days when I *know* she can use her big kid voice to ask for things, or talk to me politely, or phrase things as a request, etc. I tell her that there are some days I just *know* the 'flamey-wameys' (her term) are taking over and that I let things slide on those days. BUT, on the days that she's clear but still behaving like she's not, I remind her that she's fine today and remind her of my expectations.

 

I don't know about you or your son, but for my dd things wax and wane from day to day or week to week. When things are that unpredictable it's confusing and hard to set consistent rules for my 'sick' kid, but I try my hardest to make sure she's treated as a 'well' kid whenever possible.

 

I hope this helps in some way,

Malke

[ange]

Sounds like my son. Can't transition, stalls at bedtime, and rushing him just sets off a meltdown, throwing things down the stairs, shaking the banister (I hope it doesn't break!), etc. Even when we are having a good day, it can change rapidly out of nowhere, like a storm cloud that justs creeps up all of a sudden.

 

For people not experiencing this, there's just no way they can even fathom the havoc it wreaks on your daily life and mood.

 

Keep strong!

[smartyjones]

My husband is tired of PANDAS being the excuse for every behavior of my son.

 

LAst spring when he started this constant potty talk I didn't attribute it to PANDAS

 

it's hard to say what is just due to being stubborn, or a kid, and what is PANDAS related. The typical OCD behaviors are easily identified, however, the defiant behavioral attitude is a little trickier to pinpoint.

 

 

i will disclaim that i tend to think in a pandas child, most of their dsyfunctional behavior can be attributed to the illness.

 

in our situation, that defiant behavior is definitely a pandas symptom. at other times, he is a sweet cooperative boy. nice, sweet, happy, polite -- that would make a bystander fall over -- probably much in the same way that a bystander would fall over to see the defiant obnoxious behavior. after discussion, many times that obnoxiosness is rooted in some 'reason' that although irrational to us, makes much sense to him. my other child (although now having pandas/lyme issues also) , and most kids i know are much more even-toned-- either in their cooperative or defiant nature. i also believe poor manners and simply being a pain in the a** are actuallly symptoms -- i'm not sure if wrapped up with OCD or with 'asperger-like' behaviors but i think there's something to it.

 

two books i have found helpful -- mainly for my attitude and coping skills than for changing his behavior -- are The Explosvie Child and When Labels Don't Fit. Both offer explanations of how the child is actually processing requests, demands, etc in a different manner that makes cooperation difficult. They give techniques that can help ease the situation. i believe it's in When Labels. . . , there's a quote something like it's not giving in to them but helping create a scene where they are able to cooperate.

 

that being said, they still need to be held accountable for inappropriate behavior. ds has had times of hitting his brother -- that's just plain unacceptable.

 

i'm still having trouble with the stalling -- mostly when getting ready to leave the house. i guess i need to re-read the books for some ideas.

 

i'm not sure if you mentioned cognitive inflexibility as a symptom for your son. my ds definitley had that and it would rule much -- like not going to a friend's house b/c the next time was supposed to be at our house -- all made up in his mind. that has improved immensely with treatment. today he wanted shorts b/c his brother had them on. his summer clothes are actually not even in this house so i really couldn't get them. he 'needed' them. whined a bit. i repeated his statements from Explosvie Child. when there was nothing to argue about, he went off to do some game. then his brother told him he could just fold up his pants over his knees. he said, "oh, great idea". they're out playing basketball right now. that never would have happened last year. he would have been entrenched in 'needing' shorts for the whole afternoon.

[nicklemama]

Those are PANDAS behaviors in our house. My DS was not like that before PANDAS. When he's having a hard day, even warnings don't work. When things are going well, a warning of 5 min for bed or to get off the Wii or whatever, works well. He'll say "okay mom". On a bad day, he will stall, ignore and then get upset when you really push him.

 

My dh is much less tolerant than I. He wants to just tell him to get off the Wii or go upstairs and have our son comply. DS simply is not capable of that anymore.

[Iowadawn]

I haven't read all the posts, but I get the general gist. Boy, can it be a fine tightrope to walk. And we have been on it for 10+ years (Now we know lyme,too). Emotional regulation, ability to use "braking" in behaving--when my boy is operating on all cylinders I am not called a piece of $%&%$#. WHen he is told that his time is nearly up he will say "OK", or politely barter for a little more time. He will apply the brakes when warned. Traditional techniques work. Carrots work; consequences work. Be a French fry sort of a HAppy meal and just about everything goes out the window, it seems. It can drive parents insane, and be a source of contention in a relationship. Pick your battles judiciously. I often stop and think how even the worst parented kid would not think of calling their family members awful names or threaten to kill whomever. Maybe there is one thing near & dear to your child. The computer for our son. Over 1 health safety property violation or 2 insults to M & D and the computer is done for the day. As he improves, we tighten it. If he is off the wall--we suspend it until we see better behavior. But, every kid and situation is so individual and some days it is "just get to the other end of the day-alive or sane. My conclusion is that PANDAS makes the whole behavior control thing so much more difficult. If we had stuff attached to our basal ganglia we would go wacko, too, at times. But once the line is drawn, stick to it. Always remember that the healing process is not an overnight, flip-the-switch thing. I really don't have a good answer. Dawn

[Ozimum]

Hi jdude,

 

Our DAN doctor told me recently that he believes ODB (Oppositional Defiant Behaviour) is a feature of PANDAS.

At his worst DS also had difficulty with transition - last minute changes and being rushed were meltdown material. At first I thought this was AS but now I'm tending to think it's PANDAS.

Edited March 17, 2011 by Ozimum

[kferricks]

I have to agree that it is a Pandas symptom. Never had a problem with ODD before her sudden onset.

It is much easier with my child also to give her time to do things willingly. I've also started repeating what she says to me when she is really upset. It works! *a tool I learned from here* Thanks folks.

Edited March 18, 2011 by shadowtails

[monarchcat]

I think it's a symptom, too. My son is now 10 and when he is "PANDAS mode" as well call it, he can very very obsessive with xbox, but he is cranky and mean while playing it (to us and to his online friends). And trying to get him off it is a recipe for a huge blowup. Interestingly, since his 2nd IVIG in February he has been wanting to play xbox less and less. I don't think he's been on it for a week at this point. He's been hanging out more with the family and actually *gasp* reading for enjoyment.