Rages- what do they look like?

[Suzan]

She also - when she can - tends to verbalize opposing concepts in the middle of attacks. For instance, she'll say, "I'm hungry!" and you'll say, "Here, there's food on the table." And she'll yell, "I'm not hungry!" And you'll say, "Okay, well the food is there if you want it." And she'll say, "But I'm HUNGRY!" and so on. There' s no logic to it. It's like two opposing forces are warring in her brain.

 

Oh gosh, the opposing forces, yes! My dd pushes me away and when I go, she grabs to pull me back and if I come back, she pushes me away, etc.

 

Susan

[Megs_Mom]

Pixiesmommy & daddy - I am so impressed by the behavior plan that you have for Pixie in the am! I was thinking about this last night - this likely will not help, but I thought I'd throw it out there. I am wondering if breaking it down a little further might help. So more reward/modification steps than the current two (going to school and going to school w/out violence). One of the things that we learned in therapy was the importance of changing a pattern before trying to improve the pattern.

 

So as an example, you have already identified the full cycle of all the steps in a rage. Now maybe try to effect the very first step. try to agree on the change and reward ahead of time (and, of course, expect to try it 5-10 times before it works.) So as soon as you see the rage pattern start, maybe agree on one action that she is going to take. My child is very physical, so our steps were usually physical - such as doing a headstand, getting squashed under pillows or playing a hand/clap game). Since Pixie does better when low to the ground, and has so much energy to expend, I was thinking about push-ups, if she would be willing. At the start of this kind of program, I often help to model the behavior, so it may help to try something that you can do as well.

 

Then the other idea was to try to take the physical action (hitting mom) and change that to another object, with a strong reward system. So if you can only change that one behavior, even for one time during a rage (in other words, she might still hit you at first, but if one hit is somewhere else on purpose). I am not sure what to suggest to use that will stand up to the punishment and be readily available in the area that the rage starts. But maybe a sofa cushion (you could put these in every room of the house?). We would practice these many times before the rage, so that it would feel more "right" to her body.

 

Anyway, my gut is you are already trying this sort of plan - but I thought I'd post anyway in case it helps someone. This may not work as well in a PANDAS peak episode - but once the brain is calmed, then trying to retrain the brain to other options and then slowing out of that new habit pattern, can be less difficult. I was reading Daniel Amen's book about ADD/ADHD, and there was one type of brain that literally became "addicted to rage" - it was like the child's brain needed anger in order to be stimulated and work correctly, so they would seek out situations that stimulated the brain. He then laid out a behavior mod plan for this sort of issue.

 

Glad you fired your assitant! We also had to bring help in (mostly so that I could stay focused) and it was amazing the difference between someone that was calm and empathetic and firm - and someone who did not get it.

[ajcire]

"She also - when she can - tends to verbalize opposing concepts in the middle of attacks. For instance, she'll say, "I'm hungry!" and you'll say, "Here, there's food on the table." And she'll yell, "I'm not hungry!" And you'll say, "Okay, well the food is there if you want it." And she'll say, "But I'm HUNGRY!" and so on. There' s no logic to it. It's like two opposing forces are warring in her brain."

 

 

 

 

Ok.. now I am really wondering about a specific incident when my ds was just 3 years old. At this point we had seen eye blinking only... and that we were told was a common childhood tic and I didn't know to question it. But oh gosh, we still talk and laugh about this one...

 

Ds was 3.. and I was trying to get him to eat something. He insisted on sitting in the living room and I said ok... but then he realized he didn't have a fork. He started screaming he needed a fork. He wanted to get the fork himself but refused to get the fork himself. I got the fork for him and he started more hysterical. He was screaming that he needed a fork, needed to get the fork himself but was not going to get the fork. I was home alone with him and called my mom on the phone so that she could hear what we now lovingly call the fork incident. I think I needed someone else to hear the insanity. The incident only ended when he finally passed out on me from exhaustion.

 

Now when ds is having those opposing concepts in his head that you are referring to we always say he's having another fork incident. Of course I will never know if back then when he was 3 if that was the beginning of this or if he was just overtired and having a bad day.

[faith]

pixiesmom - do you get any solace from the fact that you are an extremely strong person? you should! you are!

 

I don't so much refer to my son's tantrums as "rages" although i believe it the same mechanism but milder in that he doesn't have an angry sense - just intense, out of whack upset. i refer to it as an inappropriate fight or flight reaction - set off in a split second. before the summer and help from the explosive child book, we couldn't understand what was going on - it just seemed like he'd simply freak out for something minor or no reason at all. techniques in that book have helped us see where he is coming from. more often than not, his concern is prefectly reasonable, his reaction is totally not.

 

he gets into a defiant realm where only his solution or thought reigns. it is impossible to reason with him - if we were driving off a cliff, the tantrum would continue; if we're leaving somewhere he wants to be at or not going somewhere he wants to be b/c of the tantrum - so be it, he'll continue on. if you didn't know him, you'd think him extremely bratty - that he wants his way and his way only, just b/c that's what he wants. he does much crying and yelling and repeating the same thing. it's very difficult to move from where we are to where we are going - flipping himself out of car seat, making body rigid so you can't click him in, sitting/laying down, one time opening the car door as i was driving. if i pick him up, he will kick and punch but it's b/c i'm moving him, not from coming after me. all the while, his brain is stuck on his initial thought of what the trouble is and cannot move from it.

 

he will sometimes push at me - pushing his body against mine - as someone else described to get me to move somewhere or stay somewhere. i don't think its so much an act of aggression as frustration that things are not as he wants them.

 

he is 5 and although pre-pandas i said he had a defiant streak, he didn't have these types of tantrums when younger. i now wonder if that streak has been latent pandas all along.

 

we're still trying to ferret out if it's more complex ocd or anxiety & panic. he is doing better with these types of tantrums as he progresses with our medical treatment. in fact, as i look over my log the past 2 weeks, the tantrums have all been related to his other big issue which is delaying the potty, he hasn't had these inappropriate reactions other times.

 

 

I think this post by smartyjones is pretty close to what my guy did/does, alot of similarities here, almost to a tee. but he is 10 now, but I totally relate to all of this. I have said "defiant" when he was younger too. lol, I have had the book "The explosive Child" on my nightstand for a bit not too long ago. .... and the carseat thing, I remember an incident when he was about 4 (and again, I knew nothing of PANDAS then (and still don't know where we fit in, but this is all helping me to see I am not too far out of the ballpark) , but he did start ticcing at 3 1/2, so maybe this was the beginning), and he did something wrong in McDonalds and I took him out of there. he carried on so bad to go back in and would stiffen up so much that I could not buckle him in, I thought I would break him from pushing him back into the seat to click him in. he kept crying and repeating "no mommy, I want to go back", ..."I...want..to..go...back".... I kept looking up in the parking lot to see of I would get caught on one of those surveilance cameras and get busted, lol. My husband could not realistically beleive that I could not overpower a four year old.....until it happened to him!!!! lol. ahhh, good times.......

 

Faith

[thereishope]

Sounds like me. I feel so lucky the police never got called to the house, stopped us at a store, or had child services come to check if everything was okay.. I ran to close our windows so many times when he had a PANDAS episode in spring. I kept telling my husband just to leave the windows closed, but he wouldn't. Boy, can my son get loud!

 

 

I kept looking up in the parking lot to see of I would get caught on one of those surveilance cameras and get busted, lol.

 

Faith

[faith]

bumping up for M.

[JDuffner]

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Wow....if these guys only knew.

 

So I am relatively new to the board. To introduce myself, My DD6.5 had Kawaski's with IVIG at age 3 and now PANDAS age 6.5.....looking back week by week at her medical records, emails,. etc....it could have always been strep...grrrrr nasty frickin bug. I am thankful to each of you that have given me hope over the last few days in reading your posts where you have come and where you are heading...I am still learning the ropes of all the tests, what they mean. My DD did have Cunningham's test and her Cam Kinase was 172. I am thinking of getting myself just to see. You have all without knowing it given me so much invalueable information in all your postings. Many times I see pieces of my child in each of yours. I do think there may be something genetic. Dad has ADD. I have auto immune (hypothyroid). We have been doing Zithro 200mg 2x weekly and increasing to daily when she flares with illness (which has already been four times in the last 60 days). Two weeks ago we saw a huge improvement and new kid on prednisolone for five days. Yet it's one step forward two back.....Friday she started with a cold which has is still present today. Today she started with OCD "mom and I doing a bad thing" over and over again each time she moves her fingers and "mom did I say a bad thing?" when she has said nothing. she had multiple melts today. She raged more when she was 3 and 4. Today it's more like the meltdowns spiraling out of control where it as if she does not even know what she is saying. I've done everything you have each posted I have given her the Zithro daily and added Motrin to the mix today. I'm sad because I see behaviors trying to creep in and I want to scream from the top of my being go away and leave my little girl alone!!!

 

If only these ads knew what we know.....there is not a cookie cutter method.....

[browneyesmom]

bumping! Thank you all for assuring me once again, that this is typical with PANDAS and we are not alone.

 

Calling Dr. B in the morning!

[EmersonAilidh]

Thought I'd contribute. I don't have time to read all of the replies, about to leave for some last minute Christmas shopping, but I just wanted to add a few things. Like Peggy's doctor, all of my rages are taken out on myself. Even if your kid does express rages towards you (because I sure know I have minor ones with my Mom), doesn't mean they're not hurting myself. I think a lot of the rage is OCD frustration. I can be in my room, everything's fine, but if I come back during a rage I will LOSE IT if there's a shirt on the floor or something. When one psychologist asked me why I hit myself, I told her that I had to. Not in a "The voices are telling me to" way, but it's just like any other compulsion for me. I have to. Doing anything else at that moment doesn't make any sense & isn't an option. That psychologist is the one who diagnosed the P.A.N.D.A.S., when a whole lot of nothing was understood about it, & said that my rages stood out from normal teenage angst because lots of teen girls will cut over a boyfriend or something (which I did do for years, granted never over a boy), but it takes a psychiatric problem to be able to beat your legs until they turn purple. The opposing forces thing is definitely true, although another common thing for me is "I DON'T KNOW." Yesterday in the recovery room after surgery they asked if I wanted to go home. I DON'T KNOW. Do you want to get dressed? I DON'T KNOW. How are you feeling? I DON'T KNOW. I always react HORRIBLY to anasthesia. Does anyone else have this problem?

 

Another thing I just wanted to throw out there is the joint locking. I know this is common in normal tantrums & it's one of the biggest parts of my rages. I'll lock my knees until I fall. Fingers & elbows too. My neck & shoulders contract (which I really think is just the Dystonia acting up from all of the tension) into really unnatural positions (my head will be as far back as it can go & my shoulders look like they are doing their best to meet eachother in front of my chest. Someone in class told me I looked like Emily Rose one time.

Which is another thing. Rages in class. We all know that bottling emotions is bad. Bottling rages is damn well near impossible, excuse my French, but holding them back is plausible, albeit ill-advised. In class I'll clench my hand until I can't write, tense my feet until my ankles pop, & hit my wrists on the desk. I cry a lot in class too, although not the uncontrollable sobs seen in private rages. Well, not PRIVATE, but not-at-school rages.

 

Hope that helped at all. <3 I also posted a little bit on BrownEyesMom's "ER Again" discussion.

[Priscilla]

this sounds alot like my dd- we just had one monday night in the car (what fun that was) that left my face, neck and arms full of scratches- for some reason it was all about my face on this one- Seriously, I look like I got attacked by a pack of rabid raccoons. Just have to tell everyone, its a long story, don't ask. My dd recently started cussing at me during these, this is hard, calling me a F&*#ing B%&ch- my little girl that used to say "stupid" is a bad word and would never call anybody that. For some reason this is the part that really bothered me, it shows how this terrible illness is not only robbing her childhood, but her innocence- UGGGGH- sigh...

[browneyesmom]

My DD11 will often tell us to "let go of me", when she is the one holding one of us. If we tell her that, she will say repeat, "Let go of me!"

[Priscilla]

as odd as it is, this is a relief to know these rage/tantrums are much the same for many of us. The kicking, hitting, scratching, biting, conflicting requests, crying to get away at the same time I can't be out of her sight, dilated pupils, hatred, fearlessness... we have it all. This just confirms there is a syndrome type behavior going on here. I have found that not reacting, just being there, quiet, and waiting for the end when she just says "mommy hold me" while she is crying has helped it pass a bit easier. At first, I reacted more, fearing that this is "who" she had become. Now that I have seen her better (so good she went 2 mos without abx) it is so obvious how sick she is now that she has slipped again. This helps me not to react, but it does make me so sad for her. Help Lord Please....