Rages- what do they look like?

[pixiesmommy]

This came up in another thread, so I thought I would s/o and detail what rages are like for us. You're welcome to add what they are like in your home too, obviously.

 

Typically we see what I call "posturing" before the rage begins. This is not always the case, but when it happens, it looks like this:

 

Body stiffens

Sometimes tics (if they are present) increase

Hands to face (nail biting or cuticle- picking sometimes, or hands over ears, using object like pillow to cover head)

Won't make eye-contact, will face away or edge away, scoot chair back or tip chair

Will sometimes do a contorted posture, like putting her head in the seat of a chair or couch with behind in the air

Usually non-verbal, but sometimes muttering or whining something incoherent very softly

 

Then comes the jerky motions like she doesn't know which way to go

Feet start to kick out

Body inches toward you

Menacing, angry look

Sometimes will roll on floor or throw herself to floor and kick out at you

Will punch or slap/paw at you or push you, occasionally will try to pull or grab onto clothing, clutch onto leg, arm, etc and hang on you

Usually whining or grunting louder

 

Then the real aggression

Pushing things over (knocking over chairs, kicking objects, flailing arms across a table to knock contents off0

Rocking things- tipping a chair or stool, etc very violently while sitting on it, or an empty one with her feet

Sometimes gutteral angry sounds, but often screaming something over and over that doesn't even pertain to episode, like, "You're a LIAR!!!"

Will scream and protest that you are hurting her or that furniture hurt her, even if no one is touching her

Violently begins to shove or paw to the point of pain and having to fend her off

Huge, wild kicks in the air, trying to aim for stomach or face, or for her little sister (rarely)

Grabbing skin and pinching, twisting, and recently biting

Trying to bang her head into yours if you are at this point trying to restrain her

Not able to hear any sort of reason

Weeping uncontrollably

Often sweating

Running like she is scared for her life- up and down stairs, throwing things as she goes, running into objects, slamming doors

Sometimes will pant or hyperventilate

Sometimes throws herself into furniture or the floor and seems to not feel pain in the moment

Will try to stomp your feet or hands if she can get them

 

 

This can be over anything or over nothing. Sometimes there is build-up with the posturing and you can try to talk her down or you can prepare yourself, and then other times it takes you by surprise and she is running headlong into you to attack you for a reason you can't comprehend. She used to not be able to discuss them at all, but now we can usually talk a few hours afterward and get more info about what triggered the panic and rage.

 

Hope this helps.

Manda

[memom]

Wow. How hard. Thanks for sharing such difficult experiences. It sounds like in addition to being heartbreaking and stressful for you (as well as dangerous), but must be no picnic for her either. I hope these keep getting better with the IVIG you did.

 

My thoughts are with you. Makes even my worst day seem like a walk in the park.

[sf_mom]

Wow!

 

I wanted to add something I noticed pre rage in our son.... his pupils seem to be super dilated. Typically, I'll notice his eyes change about 15 minutes to 1/2 hour before the rage. When this occurs, I confirm other individuals in the room under the same light conditions are not as dilated and I know a rage is just around the corner. Thankfully, he has gotten much better.

[thereishope]

My son has ripped my clothes too. He's pulled my hair very hard. He has also tried to strangle me,and himself, with his hands. I'm trying to remember his rages. Thankfully, it's been months. I don't think he was very verbal during them. Maybe more animalistic sounds like grunt and roars. They do seem to get added strength too. Probably from the adrenaline rush.

[peglem]

My daughter mostly self injures- smashes her knee into her face, slams her head against all manner of hard surfaces, hits her elbows on her hips (bruising both hips and elbows)- she strikes out at us when we intervene to keep her safe.

[smartyjones]

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.

[Suzan]

Manda, we see a lot of what you describe too although they don't get quite as intense with the major agression. Thanks for posting, I find it helps to see others experiences in writing. It often helps me to put words to our own experience. Big hugs to you!!

 

Tonight she was upset with me because I took the scissors out of her hand since she was using them to stab some papers in anger (although I didn't know this was the issue until it was all over). This caused a sobbing incident that ended with her crawling on the floor pawing at me and hitting my coat and making these strange gutteral noises. When I would talk to her to try to find out what was going on, she would crawl around and gesture and grunt, all the while crying and hitting herself in the head with her hands and grabbing her hair. I often just sit there and stare at her not knowing what to do since just about anything makes it worse or just last longer. I have even just ended up laughing at it all because otherwise I'd be crying or screaming myself. Tonight she popped herself right out of it on her own. I have no idea how but I was so glad.

 

Susan

[smartyjones]

when i was first learning about pandas, i read dr. bocks healing the 4 a's book. it doesn't have so much about pandas but i seem to remember for him, the "turn on a dime" emotions and immediate freak-outs were a big red flag for pandas.

[ajcire]

It is interesting to seem certain things. My ds does not have aggressive rages. His are more where I say he is melting down... or having a completely irrational response to being angry or upset. I know it's not funny but during some of those times when I feel like losing it I just stop and remember what my mother once told me...."You just can't reason with a crazy person" I do hope that isn't offensive because I am not implying our children are crazy.. but somehow it helps me when I am trying to reason with him and getting angry over it.

 

My ds's are not physical but still it's like he is jumping out of his own skin. He becomes irrational. If I say he can't have a chocolate cake for breakfast he might respond with, "Fine than I'll never be able to eat again." I remind him I didn't say that but it doesn't matter.. he is no longer with me and is responding crazy and irrational. Fine, then I'll never is a fairly common phrase from him now. I know how mild and silly that scenerio seems but just showing how it presents in my more mild situation. I can see it in his eyes though that sometimes he wants to lash out but somehow he manages to control that with me. The only time we saw serious aggression was when it first started and he was going through sleep anxiety and we thought it was just behavioral and tried to make him stay in his room alone... We saw a child we had never seen before during that time.

 

He also does something weird where he will intentionally say the opposite of what he should. When he starts his obnoxious opposite talk I start trying to figure out who has strep.

 

He sometimes will run to his room and put the blankets over his head, or covers his face with his hands if he is not able to go up to his room. It often usually involves a certain tone that he yells in..different from when he is just upset like we all get sometimes. It's like a tone with no inflection. He also starts with talking opposite... like he says exactly the opposite of what he knows he should be saying.

[thereishope]

My son had both rages and meltdowns. What I called meltdowns were "moments" of (lack of a better word) insanity that would last up to 2-3 hours at their longest, but weren't as physical or agressive. A lot of loud screaming, crying, physically melting down to the floor. He'd have the look of fear, sadness,and confusion combined. It takes a lot out of them.

 

 

It is interesting to seem certain things. My ds does not have aggressive rages. His are more where I say he is melting down... or having a completely irrational response to being angry or upset. I know it's not funny but during some of those times when I feel like losing it I just stop and remember what my mother once told me...."You just can't reason with a crazy person" I do hope that isn't offensive because I am not implying our children are crazy.. but somehow it helps me when I am trying to reason with him and getting angry over it.

 

My ds's are not physical but still it's like he is jumping out of his own skin. He becomes irrational. If I say he can't have a chocolate cake for breakfast he might respond with, "Fine than I'll never be able to eat again." I remind him I didn't say that but it doesn't matter.. he is no longer with me and is responding crazy and irrational. Fine, then I'll never is a fairly common phrase from him now. I know how mild and silly that scenerio seems but just showing how it presents in my more mild situation. I can see it in his eyes though that sometimes he wants to lash out but somehow he manages to control that with me. The only time we saw serious aggression was when it first started and he was going through sleep anxiety and we thought it was just behavioral and tried to make him stay in his room alone... We saw a child we had never seen before during that time.

 

He also does something weird where he will intentionally say the opposite of what he should. When he starts his obnoxious opposite talk I start trying to figure out who has strep.

 

He sometimes will run to his room and put the blankets over his head, or covers his face with his hands if he is not able to go up to his room. It often usually involves a certain tone that he yells in..different from when he is just upset like we all get sometimes. It's like a tone with no inflection. He also starts with talking opposite... like he says exactly the opposite of what he knows he should be saying.

[Megs_Mom]

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.

Just wanted to say that I completely agree with this post - you and your husband are so strong and such great parents. I have nothing but admiration for you and your efforts for Pixie. She is so lucky to have you fighting for her.

 

I also found the "Explosive Child" book very helpful - although we did not ever have the level of rage that you are dealing with. Our daughter tended to the "flight" (avoidance of everything) reaction, rather than the "fight" reaction. I wonder if she is continuing to react to OCD frustrations when she rages, or if you think it is another reason? I'd love to hear a little about her explainations afterwards, if you don't mind sharing. I always learn a lot from your posts. I find the question of the "last 10%" so interesting - and appreciate the suggestions earlier today about Prednisone. We are going to discuss both increasing Azith and then trying a short trial of Prednisone to see if that helps us over the last hump.

 

I am so glad that she is getting better and really hope that final 10% is over soon. All my best - Susan

[Stephanie2]

Thank you so much for starting this thread. I always feel so alone when my son becomes oppositional and aggressive. I feel like everyone around me gets to have peace (including my husband who loves his job and is currently out of the house except for one hour of the kids' waking hours) and it makes me feel so angry that I have to go to battle with my son (I posted yesterday that he is doing well, but after missing a couple doses of abx, we had a rough day today). I am so "war-torn" and it just takes so much out of me! I just want some peace and to stop walking on eggshells. I said to my husband the other day that if my ds was my boss, I would quit. If he were my boyfriend/husband I would get a divorce, etc. My dh thought it was a terrible thing to say, but did any of us ask to deal with dysfunction on such an intense level? It is so hard some days...And then I feel terrible for not thinking more about the nightmare that ds is going through. Oh, the myriad of emotions...sigh.

 

Oh, well...if anyone wants a good laugh, I wrote a blog post tonight about our experience at the West Palm Beach City Commission Meeting tonight. I attempted to bring my 18 month old who has an ear infection and my pandas son to this meeting and it ended in embarrassment and disaster! What was I thinking?? Trying to be normal I guess...silly me. :-)

 

Stephanie

http://thelight-stephanie.blogspot.com

[EAMom]

when i was first learning about pandas, i read dr. bocks healing the 4 a's book. it doesn't have so much about pandas but i seem to remember for him, the "turn on a dime" emotions and immediate freak-outs were a big red flag for pandas.

 

very insightful...I that certainly held true for us....walking on egg-shells b/c I never knew what would set dd off.

[EAMom]

Yes, we had tantrums....but not as bad as with pixie!

 

I should also warn everyone...our most aggressive tantrums came with Lexapro (SSRI-serotonin syndrome....combined with PANDAS?)....so do watch out for the psych. drugs!

[pixiesdaddy]

We have definitely seen the fight or flight response.

 

Interestingly, her worst rage storms seem to come when she wants something that she actually realizes is impossible. For instance, she had a computer game she liked and we visited my parents. When it got late enough, she realized - privately and to herself - that she wasn't going to be able to play her game when she got home. She began rolling on the floor and grunting and no one had any idea why. She didn't get violent, but she couldn't articulate the thoughts that were going through her head either.

 

She has seemed more able - recently - to respond (at least for me) to quiet tones and logic. She still gets upset, but usually won't lash out.

 

With my wife, it's been a different story. I don't see her in the mornings - her worst times - though.

 

One thing we noticed with the rage attacks is that - literally - the lower to the ground she goes, the closer the attack is to over. When she begins lying on the floor, even if she's still kicking or crying, we know we're almost home free. When she's up and vertical, she's much more likely to be aggressive. I've taken to standing with my back to a wall when I see her amping up. For some reason, it de-escalates her to not have as much free access to my body.

 

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.

 

 

Pixiesdaddy