Stress overload, defiance, what is this?

[dcmom]

Hi everyone.

 

The girls continue to improve.

 

We have one lingering issue (well a few, actually- but this is the most troublesome right now) with dd, age 9.

 

She was always my "easy" kid, my rock. She was always responsible, respectful, helpful, etc. So- I know what we have here is thanks to pandas. I just don't know what it is, or what to do about it.

 

She is difficult. If she is told "no" to something (you can't have ice cream right before dinner, I won't carry your backpack, etc) , or asked to do something (tidy her desk, pick up your clothes, etc) she will have a "fit". Luckily, most of the day is smooth- she goes to school, does her homework, practices piano, etc, nicely and independently. But about once a day, we come to one of these issues and she just lashes out. She will get angry, yell, talk back and be really disrespectful. If we don't REALLY diffuse the situation (usually by almost giving in- some sort of compromise) it will really escalate.

 

I can't seem to find a pattern (time of day, certain issue), and do not always see another stressor going on at the time.

 

Is it regressive behavoir? Is it stress overload from dealing with the anxiety/ocd (which is improving- but not gone)?

 

How do we handle it? I feel like she just has to get her way (or almost get her way) or the whole day will be ruined because she will have a fit, take a long time to calm down, then be moody or depressed, etc.

 

Thanks for any insight!

 

BTW: since pex it has seemed like she is on a constant trend of improvement, but maybe along the way we have seen mini explosions of past behavoirs. I am hoping maybe that is what we are seeing here, and it will calm down in the next couple of weeks...anyone have an experience like this?

[sf_mom]

Immune challenged and tired. Part of the healing process. You need to survive until she is better. This is obvious not her true self (based on your description of before PANDAS personality). Could be up to 18 months if nerve damage is involved... also could be related to inflammation.

 

I like to think its like PMSing: angry, frustrated, mood switching, RIGHT, denying till the cows come home that its everything else but me, have no concrete understanding as to why I'm acting the way I am...... until, guess what?

 

AND yes, our son has gotten better as time goes on. Hardly ever see behavior, maybe a hint when tired but very reasonable.

Edited May 12, 2010 by SF Mom

[MomWithOCDSon]

My DS's caseworker at school has a great analogy for this behavior which, yes, I think is common to PANDAS.

 

Our kids are like an empty glass at the start of the day, but little by little, throughout the day, they're taking on the "water" of "dealing." Dealing with anxiety, with stress, with expectations, with restrictions, with smiling when they'd more genuinely cry, etc. So throughout the day, that glass gets fuller and fuller, until it inevitably overflows. Early on in our treatment course, DS's glass would overflow by about lunch time. Then he would make it until he got home from school. Now he generally makes it until after dinner before some "last straw" appears that drives him to lash out, sometimes at the most innane things, too.

 

I know you want to keep the peace, and since her natural tendency has always been to be your solid kid, your "rock," as you say, she's probably less inclined to allow her healing behavior to become "forever behavior," so compromising seems like a good fix. What I think we all have to keep in mind, however, is the fact that our kids are still growing in all respects, including emotionally, mentally and socially, so it's possible that, even without PANDAS, a kid who is solid and always reasonable at 7 could have a turn toward demanding and/or insolent by 10, if conditions are primed for that alteration. And what you think of as a "temporary fix" or accommodation may become a permanent, fixed expectation on their part if it's not couched in "this is a special circumstance" terms.

 

In our house, we do a lot of compromising, too. And we pick our battles. Plus, DS is older (13), so he may be more ready to accept the subtleties and differences in today's situation versus yesterday's situation than a younger kid. But when we find that "giving in" or an atypical compromise is the best answer to a current issue, we try to reinforce with him that we're allowing this particular answer on this particular day because of the particular circumstances (he's had an exceedingly challenging day at school, he hasn't been feeling well today, etc.), and that tomorrow's answer to the same exact situation may be different. That he cannot form habits or expectations around our "rule set" while he's trying to heal because, once healed, he won't be in need of those same accommodations and he'll be expected to act more his age, show respect at all times, etc.

 

Overall, he seems to get it.

[parents4eyes]

x

Edited September 9, 2010 by parents4eyes

[dut]

Hi -

 

I don't know if I'll be much good cos OMG how I 've vaccilated on this one.. but here's where I try to stand on this if if my own temper/patience will let me.

 

When my dd first showed signs of PANDAS I would try and be firm and make my dd follow thru/do as told/stand my ground etc. I don't feel so strongly about it now. These kids are ill. I don't believe in letting my dd or ds rule the roost but if they are in an episode and clearly exhibiting PANDAS behaviours I ask myself if I would punish or reprimand a tic. Does the behaviour feel as out of control for your dd as a tic would .. if it does then to some extent I would let it slide.

 

I understand that you don't want to reinforce OCD behaviours or create a monster but if your dd is behaving well for most of the day and only letting rip a couple of times a day I would take the easy road for you and her while she heals and treat it like an uncontrollable behaviour...

 

If you're worried about setting precedents could you talk to your dd when she's receptive and explain you're going to let her do this at times now but not once things get back to normal and why?

 

I really don't believe they are intentionally being naughty any more than a child will intentionally tic and I know how OCD behaviours in particular can be residual but this temper/frustration tolerance stuff, certainly for my kids, totally disappears once they are well again (until next episode...) and for your dd it doesn't sound OCD ish but more like frustration tolerance.

 

I've been reminded of this just today as both my kids are ramping up into episodes and ds2 just went "naughty" for the whole afternon. Hyper/defiant/toddler aggressive and I played it completely wrong. Treated him as though he was well and the rest of the day went to s*** from there. If I'd pulled my horns and let it slide, he'd feel better/calmer, I'd feel less guilty and nobody's head would have fallen off for him not following normal family rules for the day. Here's to hoping I learn my lesson for tomorrow (and that I also get the ibuprofen out of the cupboard sooner).

 

Good luck..

[NancyD]

This is exactly what we have been going through since DD14 was in pre-pubescent years and it has continued to get worse. I am sure that hormones make each exacerbation 100 times worse. In fact, I think hormones are the biggest stressor for my daughter. And like you, I lightened up during those times. Problem is, when I did so, she played on it and as a result, she learned how to manipulate me bigtime and it got worse over the past few years. 'Course, when she was in remission (or as close to remission as we got during that one great year we were doing IVIG), she didn't manipulate me as much. But in hindsight, I wish I had not let her get away with as much as I did. Because now I am paying the price!! Since November, when she was exposed to so much illness at school, her behavior got much more defiant and with the most recent exacerbation a few weeks ago, which landed us in the hospital, she's more defiant than ever before. If I had to do it all over again I don't think I would have caved in so much because she learned what she could get away with during her PANDAS exacerbations and she has taken advantage of it eversince. From here on in, once she gets out of the hospital, I am not going to cave in any more. Because the defiance has grown ten-fold throughout her middle school years. I don't know what the answer is...I really wish I knew. But I can tell you defiance in the early teen years is much more dangerous than defiance at age 8, 9, or 10. It's very scary now! In fact, last week's self piercing of her lip was definitely an act of defiance!

 

One thing I did ~ age 12 was to take my daughter to a neuro-endocrinologist to check her hormonal levels. Turned out her levels were normal but it might not be a bad idea to have your specialist or pediatrician check your DD's hormones. Even at 9, hormones can play a role. With the most recent exacerbation she happened to have her period.

 

I would love to hear from any parents on this topic who have successfully managed the defiance. I too can use some tips.

 

Nancy

[ajcire]

I see this too.. .it's probably our main symptom now... fortunately minor, doesn't escalate into huge rages or anything now and he will just put himself in his room.... but he's there right now over something and he finally stopped yelling about how his life his ruined and he will have to stay in his room forever... or something like that... Quite the the dramatic one. The hard part for me is that shortly it will just switch off like nothing happened... while I still remember exactly what happened...

[smartyjones]

She is difficult. If she is told "no" to something (you can't have ice cream right before dinner, I won't carry your backpack, etc) , or asked to do something (tidy her desk, pick up your clothes, etc) she will have a "fit". Luckily, most of the day is smooth- she goes to school, does her homework, practices piano, etc, nicely and independently. But about once a day, we come to one of these issues and she just lashes out. She will get angry, yell, talk back and be really disrespectful. If we don't REALLY diffuse the situation (usually by almost giving in- some sort of compromise) it will really escalate.

 

 

How do we handle it? I feel like she just has to get her way (or almost get her way) or the whole day will be ruined because she will have a fit, take a long time to calm down, then be moody or depressed, etc.

 

dcmom -- i know i post on here ad nauseam about techniques from the book the explosive child, but here i go again. i'm not sure if it would be helpful in your situation, but have you tried that? we more often have it as a problem when he simply has a problem, but you can also use it if you've asked her to do something or told her no - you quickly go into repeating what she's saying rather than again telling her what you asked or defending why you've asked it or said no.

 

i think i find it so helpful b/c it allows me to be involved with him but not engaged in the tantrum/defiance. how do you react when she lashes out? are you upset with her behavior while she may be trying to communicate a concern? that's what i used to do. i'd be drawn into how he was acting and try to deal with that, while he was so wrapped up in whatever his problem was, he was not even able to process what i was getting at. with this, you have to suspend that her behavior might be inappropriate, you can discuss and work on that later when all is calm, you are simply working to diffuse the situation without having to give in.

 

with this, you would repeat what she is saying. you can do it as a question, as a statement devoid of emotion, as a joke, with shock - whatever seems appropriate at the time. i think at first, it's best to do it flatly, devoid of emotion. the thing is, you're not adding any fuel but you're also not giving in so it keeps things from escalating. you're trying to get things to a point where she can be reasonable again.

 

for my son, this usually comes up in a flight or fight reaction. whatever has brought it on, his mind slips into only that track and he can't change it. nothing else works b/c it seems to only entrench his track. with this, he's not fighting against anything and it allows him to slow down and then he's able to get off that track.

 

i don't know what it is with him - is it ocd, difficulting processing, brain chemistry etc - that has him quickly flip into that one track. when we use this repeating, it seems to give him the time and space to be able to get out of that track. over time, we've gotten to the point where we still repeat his concern a few times but then we can work on a solution. as long as things don't escalate, he knows we're coming to a point to discuss and find a solution.

 

unfortunately, we seemed to have lost his sweatshirt he's been wearing the past week or so. i took it from him in whole foods b/c he was swinging it around a display of cases of glass lemonade and i didn't think i needed to buy many whole cases of broken lemonade bottles. we were just in there quickly trying to grab something before going to a dr appt. somehow, we don't now have the coat. yesterday, he wore another sweatshirt to school - no problem. today, as we're going out the door, he wants that one - a sweatshirt with a hood. not the windbreaker with the hood, not the plain sweatshirt. "then i'm not going to school." -- we didn't do the repeating so well this morning but were still able to get him in the car with me bringing both jackets. still "i need that coat with the hood", "i'm not going". i say "you're not?", "that coat", flatly, not agreeing, not arguing.

 

my husband goes right by the whole foods so he said he'd run in and see if it was there - i was supposed to yesterday but forgot. it wasn't. as we got to school, a 15 minute drive, he asked if dh was able to get it. i said, no. he said "will we ever get it?" i said, "i don't know, we can try again, but maybe not." as we drive in the driveway of school, "okay, i'll take the red sweatshirt". he put it on, went into school.

 

he's mind switched track into the rational reality that we simply don't have that other coat, he's got to go with another option. i think he was able to do this b/c there were not other messages coming at him trying to get him to change it or provide other solutions, just stating along with him what he was stating. the only track in his brain was 'i need that jacket'. it seems if i get on to his track, then he's able to switch himself rather than me trying to switch him or help him switch.

 

this has helped us live in the world of what is rational and reasonable for us rather than feeling controlled by what he can/cannot and will/will not do. in this story - yes, we bent a lot but it was our choice rather than feeling we were stuck and had to do it. eg. i was in whole foods yesterday and had told him i'd ask about the jacket -- i totally forgot. my husband goes right by there on his way to work and was willing to jump in and check about the coat. so it was from a sense of we choose to do this rather than we've got no choice.

 

so, if we hadn't been able to do that, would it have turned out differently? i don't know. i do think the repeating would have brought us to a place that we can all think clearer and make decisions on how to proceed rather than everyone being escalated in frustration.

 

also - later today, at a calm time, i will discuss that unfortunately, sometimes things get lost and we may not be able to get them back and that this all started b/c i had to take it away b/c he was swinging it first, in a store and second, near breakable bottles. you certainly address the troublesome issue, but at a calm time when it's a discussion and ask for ideas on how to change rather than when all is heightened.

[Megs_Mom]

I have wanted to reply to this from the "mean mama" perspective, but SmartyJones just save me an hour of typing! Great response!

 

We have approached this issue with a lot of compassion, but with a view toward long term. For a long time, I thought that her challenges were very likely "for life". Now I hope they are not, but we still keep that view in mind. So the question I would ask is "if she is 25 & has a child or a husband, how does she need to learn to handle this?". We never asked her to do something that we had not discussed or practiced. We always tried to give her tools to her her manage the situation. And we always remindeded her that we loved her and that while we were very sorry that she had this challenge, that she had to learn tools to handle her life. Then we tried very hard to avoid or pre-empt issues before they started. Honestly, I don't think she cleaned her room or put her clothes away for about 2 years. I did not ask her too. I felt that homework & dealing with anxiety was enough. I did ask her to do things, but anything that was large, I just quit on for a while. I did not say this was an accomodation, I just lowered my standards big time. I have now dialed these up again, and it was not as hard as I thought. But if I say "no" to something, like ice cream before dinner, well that has to be respected. So for the examples....

 

First of all, we have different standards during an exacerbation than at other times. So we are totally fine with her screaming in her room for an hour. That is not a big deal to anyone other than her. I am happy to sit there with her, so long as I am treated with respect. I am ok with clothes being thrown out of drawers. I am NOT ok with anyone screaming in my face, biting, hitting my or any other person or animal, repetitve breakage (one mistake is fine, twice is not). I firmly say "I will never hit you and you may not ever hit me", or sayings like that. If she is wild, I will restrain her with love and firmness. Like Smarty, I will not engage, but will simply repeat her words, or say "I am sorry you are upset, and I understand that this is hard" very calmly. I am not ok with running about the house, or with doing anything that is dangerous to her or others. And she does have to help me clean up afterwards.

 

If something that is not ok happens during a fit, then this is NOT discussed immediately. It is tabled for the next day or a calm moment. Then I say something like "I am not mad at you and I understand how hard this is. However, XX is not allowed, and the consequence is (x - loss of 15 minutes of TV time, for example - I keep the consequences fairly low, no drama)." There might also be "natural" consequences - a play date ending, missing a soccer game, etc.

 

Then I move immediately (no negotiation) to discussing the future "what else could you have done other than throwing your doll through the window? Let's make up some ideas". Then I get her ideas or make up some on my own - and then we practice this exact situation - punching the bed or a pillow, hitting something safe, being smashed under heavy covers, staying alone in her room, whatever.

 

In the next fit, as I saw it coming, I would suggest the idea that we practiced. And if she used it, then I would reward this afterwards, in our next calm moment.

 

In the calm moment, we would also always talk about what triggered it (is the glass spilling over at the end of the day? or is there some specific OCD thing that is causing it. So then you try to eliminate the trigger if they are not yet ready to deal with it. If it's an end of the day thing, then find some options here if you can. Allow more TV time (if she can handle this), brush teeth & do jammies at 7 pm or even right after dinner, so that you can move to a quick easy stress free bedtime. Move the dinner hour earlier and then offer tiny snack. Offer her quiet room time for the last hour of the day, with a special project, etc. You might also consider a something relaxing like a bath or music time. Whatever would work for her. We often ended the day by eating outside and then walking, as we found she was better outdoors than in. Don't try to do homework or chores after about 6:30 pm.

 

I remember one screaming fit that lasted 3 hours. The natural consequence was that she missed her soccer game. However, when I told her that I was not mad and that I was sorry it was so hard, and that since she did not hurt herself or others, that there would be no additional consequence, she gave me the sweetest hug and was SO grateful and felt so much better about herself. It broke my heart in a lot of ways.

 

I would also suggest that you discuss in your house who can deal with this stuff best. If it is you, then someone else needs to grocery shop & cook sometimes. I can't do it all & I refuse to feel bad about that. If I am being a full time therapist to help our child be a productive person with good tools, then someone better have my back!

[dcmom]

Thanks everyone for the advice- need to re read and digest it.

 

We are not in the total meltdown and rage stage. Thankfully, that seems to be behind us for a little while. During the worst, I let everything go- it was all I could do to get her to eat, sleep and not hide under her desk all day. As she gets better, I think I have to keep my expectations in check a little. So as far as asking her to clean up her stuff, I think I will pull back until school is over. I am thinking of treating it like ERP- and starting both kids with small responsibilities and rewards, and working up. Hopefull if they remain healthy, by the end of the summer we will have some good basic routines in place.

 

Although she is doing great- and thankfully homework is easy for her- I think there is still a lot of anxiety and ptsd that she holds inside.

 

Smarty- I am interested, and may get that book. We had the same issue this morning as you. So just some background- I know this is pandas. Caroline, as I said was always my rock. I could reason with her from about age 1. She NEVER had meltdowns, fits, ANYTHING. We were blessed, she was so easy (not a doormat in any sense- but just really smart, and reasonable).

 

Here is a perfect example: this morning she gets dressed in a cute summery outfit. We are ready to walk out the door, and she decides it is too cold. Well, she also lost her North Face jacket a couple weeks ago. I wasn't too worried, as it HAD been looking like summer was close. Well now it is cold, and she only has a sweater. So she starts getting upset ( short tempered I guess you would say), and says she is not going to school until she finds a warm jacket (she doesn't have one).

 

My typical MO is to stay relatively calm, try to help her solve the problem (wear this, try that, it won't be that cold, etc). I finally got tough and ordered her to go. That did work, but I also got some snide comments (can't remember exactly, maybe she called me mean and snotty).

 

Sigh.

 

So- I could have been trying repeating. She says "I am not going to school unless I find my jacket?" Me, "You are not going to school unless you find your jacket?", etc.

 

As soon as I see she is going into a tizzy, stop offering solutions, orders, and just repeat?

 

I will try it. I wonder if she will think I have lost it?

 

Later today, I will have a talk with her about what happened.

 

It is so sad, it must be so weird for her- as she NEVER was a kid with meltdown or temper issues, she is 9, so she kinda knows the difference in herself.

[Megs_Mom]

OMG, we had this "weather related perfectionism" too!

 

Yes, don't offer solutions or try to find it for her - just repeat! You will sound a little crazy! Sometimes I add in a phrase like "what would you like to do next?" after repeating her statement. Makes it sound a little more normal, but if this just sends her into a tizzy of options or impossible solutions or complaints, take that back out!

[smartyjones]

So- I could have been trying repeating. She says "I am not going to school unless I find my jacket?" Me, "You are not going to school unless you find your jacket?", etc.

 

As soon as I see she is going into a tizzy, stop offering solutions, orders, and just repeat?

 

I will try it. I wonder if she will think I have lost it?

 

meg's mom - you're so wise! i love it when you comment on things. sorry you had to get so wise but it's helpful to the rest of us!

 

yes - just repeat. you'll see what works best but at first it's best to just simply repeat. you can add "why" if she's not too out of hand, or "really?". i used to work with a woman who was excellent at sales, sometimes she'd just respond "really" with different intonations. it was stunning how it got her what she wanted when i knew it was b/c she just couldn't think of what to say next.

 

now i may just repeat a few words like "you're not" or "that jacket".

 

my son is younger than your daughter but it is surprising that he doesn't find this annoying. i think it's b/c he's upset and he finds it as a reassurance and comfort when it sounds like it would be just annoying. at the time he starting to spiral out of control, he doesn't really want suggestions or help, he's just thinking what he's thinking.

 

my mom has a friend whose husband is kind of difficult she was explaining this to. the friend starting doing it to her husband and found him easier to deal with.

[justinekno]

Oh my goodness, my husband and I were just having a conversation tonight about my son's behavior and whether it would be considered ocd or not. And if so, how do you handle it? This post was perfect timing! So is the consensus that the "attitude" and "rages" are ocd related? They also seem defiant to me but it's like walking on eggshells sometimes with my son.