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Dd9 diagnosed with Pans symptoms since October 2013 is currently in a flair-- acting like a complete BRAT and it's making me crazy! She's always been spoiled, so I do partially blame myself for her behaviors, but she is unbearable right now! Today was her brother's 7th birthday and from the get-go this morning she has been miserable. "I only got 1 present in the morning, why did he get 2?" "I'm so unlucky, I'm having a terrible day". Her birthday was just 4 weeks ago, and I swear, I think if she'd had sprinkles on her cake (she has food issues, so there weren't any on hers!) I swear that she would've counted every one to make sure that she got at least as many as her brother did! She refused to listen to me, or talk to me, or get ready for school this morning. Made me late for work, and stayed home with Dad until he could bring her to school.


When she's flairing, she becomes so selfish, and self centered.... Greedy, miserable. I know it's Pans talking, because when she's not in a flair, she doesn't act this way. (A least not to this extreme) -- but she has had issues like this before, primarily around her birthday compared to brother's birthday. It seems like she cant handle it when its "all about" her brother, and not her. It really bothers me, her brother loves her so much, looks up to her, ans is such a sweet, kind and generous boy, and she really comes across like a spoiled rotten, nasty and miserable little snot. I say this with affection mind you, I love my daughter more than anything, but am really sick and tired of these kinds of behaviors. What to do? Consequences don't work, they only fuel the fire. An earlier bedtime (which really benefits her by the way) isn't always possible. Rewards for good behavior don't work either. But I can't just allow her to be like that, can I?


I get so angry myself sometimes- And I find myself inappropriately goading her "fine. If you're so unhappy and miserable, than I'll take away all the presents you got, and you won't get anything from me for Christmas either since you're such a miserable and ungrateful girl." And then comes the guilt. And I try to apologize. And she won't get near me or talk to me... Bad situation made worse:(


Anyone else deal with this? Any suggestions? Where do you draw the line between brat and "having troubles". ?

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Hi Beerae,

I don't know what the answer is, but i think you bring up the question that so many of us struggle with, which how much of this can be addressed through "behavioral' interventions, and how much of this is behavior that is immune to these kinds of interventions? I mean, we don't want to let our kids behave in unacceptable ways, but will they/do they even respond to the kinds of response we would give to a non-sick kid who is exhibiting in appropriate behaviors?

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major issue here too. comes and goes. it is, definitely, a symptom like ocd and you should approach it as such. that is, you will have only minimal direct effect but perhaps can teach her strategies. it is just that she will not see any reason to change her behavior. it is not like she is washing her hands fifty times. so, we devised reward system if she is nice to her brother when it is difficult to be nice, hoping that over time -- over a long period of time -- this would become new behavior.

in general, i find it easier to stop the behavior if I set the rules in advance. anticipate a potential conflict and try to set the rules like no counting sprinkles. we also find that quick time outs help her change her mind set. time outs are times for her to relax, as we explain to her.

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As our DS is now 17 and (crossed fingers) more or less on the "other side" of major PANDAs issues, I can look back and remember a lot of similar moments in our house of the years. And because he seems to be left with some "residual" OCD, as well, we still have moments where we're trying to balance responses and interventions that rightfully suit an intelligent 17-year-old boy versus those that acknowledge he's not 100% OCD-free.


I think the best I can offer in terms of chiming in is:


- We're all human, so don't be too harsh with yourself when you answer your kid's selfish, bratty behavior with something along the lines of, "Well fine then. See what you get from ME for Christmas!" It's natural to get fed up, and our kids need to know/see that we're human, too . . . that our feelings can get hurt, that we can run out of patience, etc.

- I do think that some limits and accountability being in place, even during exacerbations, is a good way to go. Even if you let a few things slide (i.e., give more warnings, maybe) during the worst of a flare, letting our kids know that the "real world" is still out there and won't always make allowances for their behavior as we tend to do, and that there are lines that aren't to be crossed, no matter how crumby you're feeling, is good practice for when the flares die down. Sort of like keeping some ERP techniques in place to combat OCD, even when there's an exacerbation and it's harder for your kid to comply with the ERP. Just maintaining the consistency and "real world check" alive, I think, helps them in the long run. Especially as they get older and are better able to articulate how they're feeling and manage their behavior even during flares.


We know our childrens' true nature so, to the extent we can, if we can help them hold onto more of their "true selves," even during exacerbation, and behave in a more acceptable manner, then like PR40 has said, hopefully, that more acceptable behavior will become the more entrenched habit that seems them through even the tough times.

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I totally sympathize with you as I see the same thing with my kids. Everything is a fight either with us or between themselves. HappinessWe have had a hard time dealing with them for a few years - before we knew it was PANDAS, we think we dealt with minor flare. It seemed like they ruled our lives. Doing routine things around the home consumed our time, and didn't get to work on personal goals that "normal" parents enjoyed. Everyone used to tell us parenting is hard, blah blah blah. Now that we understand that this is pathology and realize we have been struggling it helps us to realize that we havent been bad parents but parents dealing with a bad condition.


The symptoms of the children are infectious. We parents take on the anxiety, OCD, anger, unhappiness and regression. Often - as in the flare we are going through now - the parents become prisoners in their own house, shackled with caring for the kids and unable to enjoy time with activities, friends and family. I have had to take a leave of absence from work. (Yay, spending more money on health care whilst making less money!) We become further removed from normal life. Our perspective of reality becomes warped.


I have found that my parenting skills decline accordingly and I need to be aware of the need to change up my game. I agree that basic carrot and stick discipline doesn't work as well if at all. Thats usually one of the first things we see in a flare - basic life becomes hard and we spend all our time trying to make discipline work. And then the light bulb goes off: they cannot control emotions and their base urges rule their bodies. Its hard to make discipline work when you are competing with violent fears far worse than any consequence you can deliver. In the worst of exacerbations, it makes as much sense trying to make them behave as it makes sense for someone to make an Alzheimer's patient to remember. But there is also there is also the murky middle ground where we don't know what level of responsibility to expect of the kids, as hrosenkrantz states.


OK I am writing too much, as this is a subject that consumes a lot of my mind. The only thing that works for my 5 and 7 year olds is

  • Reduce expecations
  • Control their environment - reduce stressors, give them things can do well, no exposure to violence or crude movies etc
  • Try not to transfer your stress or anger to them
  • Give them lots of love and encouragement
  • Give immediate rewards.
  • Use negative discipline sparingly, try to use "you are working for X so do Y"
  • Risperdal and Valium, lol.
Edited by dasu
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Oh, I can so relate! Tonight I am crabby mom again.


DD16 didn't make it to school again today. She doesn't like to explain details to me about what is going on with her anxiety, OCD, and how she feels in general. So she's in bed most of the day. I get home from work and start working at home. She calls me. I ignore her for a bit. Eventually I wander up. She wants me to re-heat her rice bag. I tell her no. I feel a little guilty and I show her some crabby. She's not happy and neither am I. My "no" to her is really what I need to say more. It is okay. What I need to stop doing is the mumbling I do (kind of hoping she might hear and change, seriously???) as I walk away from her saying things like, "Let me get right on that" and then making a sound like a cracking whip.


I remind myself that she is doing better. There were times when a "no" would have made everything escalate. I remind myself that she is still sick. It is OCD that is cracking the whip on me and I can say "no" to OCD. If it's not OCD and is actually DD, I can say "no" to her too. :)

Edited by momslove
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From a purely selfish point of view (my own), this was the perfect post to see first thing this morning. I think all of us can relate at one time or another. DS, 15, has a cold with severe stuffy nose (no green, all clear), but he is really hard to deal with right now.


On the one hand he wants to bury his face in video games or iphone. On the other hand, if you try to engage him, he is so crabby that you wondered why you even tried. I cried for most of the drive into work, today. Ugh...


It does get better, we are light years away from where we started, but mood issues have always been a problem for my son. Like you, we try to guide him and correct him but with little success. I feel like a failure many times.


Hang in there, we will get to healing.

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We have a rough time breaking the habits that are created during the bad flares. Kiddo adjusts to and begins to expect that I will get everything she "needs"/wants immediately without pause. When she begins to feel better, I start weaning her off the mommy is spelled S E R V A N T idea. Then we butt heads a bit, but she relents quicker each time and eventually starts doing things for herself again.


Mine has no sibling, so I do not have that issue *whew*.


Oh, maybe this will be worth a chuckle. When kiddo was younger, and I had told her to do something twice, the third time I simply said, "Mary, OBEY"


Actual conversation:


kiddo: mommy can I have some water?


Mommy: yes, go get you some.


Kiddo: Mommy will you get it for me?


Mommy: No, go get it yourself sweetie.


Kiddo: Mommy, help please.


Mommy: No, honey, you need to do this yourself.


Kiddo: Mommy obey!



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Thanks everyone. Dd is still flaring, and sniffling, sneezing, etc. Had a little episode with the therapist this week (first time with this therapist that she's been seeing for 2 months or so) and is struggling. Hasn't had as much odd/meanness, but we are now moving on to to whole fun, new obsessive fear category, which I will save for a separate post :( I need to get her better, I'm certain her behaviors will diminish as soon as her illness goes away.

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dasu, best response I've read.


Setting limits and accountability do not work during a flare/reaction. DD already knows her limits and accountability. How do I know? Because when she is not flaring, she behaves with a recognition of her limits and accountability ... and is actually quite well-behaved. At those times, I feel like a great parent. But when the switch flips, all of that changes. She becomes almost animalistic and, although I know what is happening, I still cannot help feeling like the lousiest parent.


Still, the rest of the world does not deserve to be subject to her selfish whims and demands. So, something has to be done. The result often ends up being social and emotional isolation, not just for her but for the rest of the family. And then any explanation that her behavior causes certain consequences is met with "what did I do???" "I don't understand what I did????" etc. etc. -- within minutes of being completely obnoxious, selfish and unbearable. How can she not know what she is doing? Yet at that moment, I see her tears, and I dare to consider that she really really does not comprehend how bad she is being. Then I feel sorry for her, but at the same time, you cannot just let this stuff slide all the time.


There is also the consideration of her own social relationships. When she was younger, you could see that people just excused her behavior as typical childhood tantrums. But as she gets older, people tend to expect more. They expect age-appropriate behavior. And when they see very age-INappropriate behavior, their first thought is never ever, "Oh, she must be suffering from brain encephalitis." It's usually something along the lines of her being selfish, a brat, spoiled, lacking discipline, and above all, the result of bad parenting (of course). "If MY kid did that, I tell you what I would do...." is one of my favorites.


We don't feel the necessity to try to explain what we are dealing with to other people who really have no business knowing, however at the same time, them NOT knowing means that we as a family are often judged unfairly. If she had some physical ramifications of her issues, it would be easier for people to have compassion. But because what she deals with is "invisible", it creates a false sense of reality. And sadly, human tendency is not to extend extra kindness. (Heck, why should they? When I often have a hard time with it myself, and she's my kid.)


When she is not flaring, she is the best kid in the world. She is sensitive to others' feelings, she is compassionate and thoughtful and always, always sticks up for the bullied kids at school. I am so proud of those moments. I try to remember that --- and we really really try to remind ourselves that that is the real kid, not the one that we see during the bad times. It's hard, but we know that she is in there somewhere, and probably trying really hard to come out.


One night, while she was "normal", we talked for a long time about her issues. I asked her why she acts like she does sometimes, and she just says, "I don't know." She says she knows it is wrong, but at the time, she wants to do it. One night she said, "Don't give up on me." It was a heavy statement from an 8yo, and I will never forget it.


I try to put a twist on things, and tell her that what she is going through will help her so much when she is a grown-up. She will have so much compassion and understanding for people going through hard times. And when she sees a kid acting like she does sometimes, she will be able to really reach out to them and give them the compassion they need.


Despite everything, dealing with what we deal with has added another dimension to my personality. Before having children, I really thought I would be the best parent :). I had it all figured out. But parenting teaches humility, and especially so for children like these.


I read somewhere that the child who seems not to deserve love, is the one who needs it the most. Although it is hard to put into practice sometimes, I believe that is true.

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