Rage/Resistance/Bizarre Behavior

[emmalily]

There have been so many posts about rage and resistance in PANDAS kids lately that I felt I really needed to say a couple words on it. I feel like, in a lot of these posts, hurt feelings/fear on the part of the caregiver (you great moms and dads out there) are keeping you from seeing what is actually going with the rages and resistant behavior in your kids.

 

So many of you have written to me, asking me what it was like in my head when I was feeling those things. I have tried my best to explain it but I think I've come up with an even better example now.

 

PANDAS, as we all know, causes a physical (temporary, it appears) problem in the brain. But we can't see it, so it's hard to think of it as an "injury." And that's not unusual. If you have done any reading on invisible disabilities then you know often the biggest challenge for people who suffer from them is to have others believe that something is wrong even when they're looking perfectly healthy.

 

But it is an injury and I think it would help to think of it in terms of any other head injury.

 

Have you ever taken a really good knock to the head? Even had a concussion? You don't feel quite right afterwards and if it was a really bad knock you probably don't behave quite right afterwards either. In fact, the symptoms of a concussion are:

 

Passing out.

Not being able to remember what happened after the injury.

Acting confused, asking the same question over and over, slurring words, or not being able to concentrate.

Feeling lightheaded, seeing "stars," having blurry vision, or experiencing ringing in the ears.

Not being able to stand or walk; or having coordination and balance problems.

Feeling nauseous or throwing up.

 

and the symtoms of post-concussive syndrome are:

 

Changes in your ability to think, concentrate, or remember.

Headaches or blurry vision.

Changes in your sleep patterns, such as not being able to sleep or sleeping all the time.

Changes in your personality such as becoming angry or anxious for no clear reason.

Lack of interest in your usual activities.

Dizziness, lightheadedness, or unsteadiness that makes standing or walking difficult.

 

(both taken from WebMD).

 

Any of those sound familiar?

 

Having PANDAS is like having a concussion that never goes away. That's what it feels like on the inside. So I think that's important to remember, when we, both patients and parents, get frustrated with this illness. Would we get so angry if we could see the lump on the head? Would we get so frustrated with ourselves or our children if we knew it was a just concussion that was clouding their thoughts for the time being? Would we expect someone who has gotten hit in the head to be making sound, responsible decisions?

 

I think you all best know your child's personality, and if they were never resistant or angry before this whole PANDAS mess started for them, I think it's safe to chalk their current resistance and anger to a personality change caused by the disease (which many of the doctors do list as a known symptom). So if it doesn't seem like your sweet kid when they're cussing their minds out at you--it probably isn't, it's the disease. Even if they're hurling the most hateful, terrifying accusations at you. That just doesn't seem to be unusual for head injuries. Try thinking of it as a concussion and go on making decisions for them as if they had a bump on the head (easier said than done, I know) until you can see their own personality come back.

 

I really wish for all our sakes this was as easy and fast as a bump on the head on the head to treat and recover from. In the mean time, I hope this idea helps you.

[forjpj]

Thank you!! Thank you!! Thank you for explaining this is so well!! I will definitely remember this during those rages, and I will use this to explain others especially!!

Sarah

[airial95]

Thank you for the great description!!! It's always great to hear from kids actually going through what my son is just too young to verbalize thoughtfully himself. Thank you!!

 

Personally, once we understood what was going on with my son's rages - the physical causes behind it (inflamation), his complete inability to control them even if he wanted to, I know we began approaching them differently. I no longer became as worried about making sure we were doing the "right thing" as far as your normal parenting skills go. This was beyond his control, and my primary job was to try to control/calm the situation as best as possible to prevent him from hurting himself or others. After trial and error - we've actually found a few things that are definately calming "triggers" for him.

 

But I can tell you, even having a clear understanding of what's happening - even more so now with your excellent description! As a parent who is trying to do everything you can for your child - it's still heartbreaking to see them like that - even if you compare it to an injury. Your instinct is to make everything instantly better and to protect your child. And even if the behavior was temporary because of a concussion like in your example - it wouldn't take away the stress and worry we all feel as parents - just wanting to do the best we can to protect our kids!

[Ellen]

Great explanation, thanks. I do get that when these rages happen the kids have limited or no control over them. Are there any specific strategies that you think are helpful in getting kids to stop themselves before they lose control? Do you think that this is possible and if so, what would work for kids who deeply regret the outbursts after the fact but can't find a way to stop themselves from doing this again? Is there anything in particular that has worked for you?

 

Ellen

 

There have been so many posts about rage and resistance in PANDAS kids lately that I felt I really needed to say a couple words on it. I feel like, in a lot of these posts, hurt feelings/fear on the part of the caregiver (you great moms and dads out there) are keeping you from seeing what is actually going with the rages and resistant behavior in your kids.

 

So many of you have written to me, asking me what it was like in my head when I was feeling those things. I have tried my best to explain it but I think I've come up with an even better example now.

 

PANDAS, as we all know, causes a physical (temporary, it appears) problem in the brain. But we can't see it, so it's hard to think of it as an "injury." And that's not unusual. If you have done any reading on invisible disabilities then you know often the biggest challenge for people who suffer from them is to have others believe that something is wrong even when they're looking perfectly healthy.

 

But it is an injury and I think it would help to think of it in terms of any other head injury.

 

Have you ever taken a really good knock to the head? Even had a concussion? You don't feel quite right afterwards and if it was a really bad knock you probably don't behave quite right afterwards either. In fact, the symptoms of a concussion are:

 

Passing out.

Not being able to remember what happened after the injury.

Acting confused, asking the same question over and over, slurring words, or not being able to concentrate.

Feeling lightheaded, seeing "stars," having blurry vision, or experiencing ringing in the ears.

Not being able to stand or walk; or having coordination and balance problems.

Feeling nauseous or throwing up.

 

and the symtoms of post-concussive syndrome are:

 

Changes in your ability to think, concentrate, or remember.

Headaches or blurry vision.

Changes in your sleep patterns, such as not being able to sleep or sleeping all the time.

Changes in your personality such as becoming angry or anxious for no clear reason.

Lack of interest in your usual activities.

Dizziness, lightheadedness, or unsteadiness that makes standing or walking difficult.

 

(both taken from WebMD).

 

Any of those sound familiar?

 

Having PANDAS is like having a concussion that never goes away. That's what it feels like on the inside. So I think that's important to remember, when we, both patients and parents, get frustrated with this illness. Would we get so angry if we could see the lump on the head? Would we get so frustrated with ourselves or our children if we knew it was a just concussion that was clouding their thoughts for the time being? Would we expect someone who has gotten hit in the head to be making sound, responsible decisions?

 

I think you all best know your child's personality, and if they were never resistant or angry before this whole PANDAS mess started for them, I think it's safe to chalk their current resistance and anger to a personality change caused by the disease (which many of the doctors do list as a known symptom). So if it doesn't seem like your sweet kid when they're cussing their minds out at you--it probably isn't, it's the disease. Even if they're hurling the most hateful, terrifying accusations at you. That just doesn't seem to be unusual for head injuries. Try thinking of it as a concussion and go on making decisions for them as if they had a bump on the head (easier said than done, I know) until you can see their own personality come back.

 

I really wish for all our sakes this was as easy and fast as a bump on the head on the head to treat and recover from. In the mean time, I hope this idea helps you.

[Priscilla]

This is great insight. My biggest problem is dealing with the physical assaults. If dd is set off, she will follow me around the house (as I try to walk away from her) kicking, hitting, pinching, punching me... I feel like I can only take so much. I have held her down (updwards of 15 min) only to have her attack as soon as I let her go. It is so hard not to lose your temper when someone keeps screaming and hitting you. Has anyone had any success with a better approach?

[peglem]

This is great insight. My biggest problem is dealing with the physical assaults. If dd is set off, she will follow me around the house (as I try to walk away from her) kicking, hitting, pinching, punching me... I feel like I can only take so much. I have held her down (updwards of 15 min) only to have her attack as soon as I let her go. It is so hard not to lose your temper when someone keeps screaming and hitting you. Has anyone had any success with a better approach?

I've approached the "hold downs" as a safety measure. My daughter bangs her head and/or bites herself during rage episodes. I tell her I'm keeping her safe and do the least restrictive hold that is effective. She tries to cooperate and my hold depends on to what extent she is able to cooperate. We established her "safe place" (on the couch, or bed-a padded place), where we can work through it. The key was for her to know that I'm helping her work through it, that I know it just happens and she can't control it. We've gotten to the point where we consider the meltdowns a chance to "practice" getting control and praise and celebration of calming when it does come is part of the whole thing. I think it helps her to feel less helpless.

[Priscilla]

This is great insight. My biggest problem is dealing with the physical assaults. If dd is set off, she will follow me around the house (as I try to walk away from her) kicking, hitting, pinching, punching me... I feel like I can only take so much. I have held her down (updwards of 15 min) only to have her attack as soon as I let her go. It is so hard not to lose your temper when someone keeps screaming and hitting you. Has anyone had any success with a better approach?

I've approached the "hold downs" as a safety measure. My daughter bangs her head and/or bites herself during rage episodes. I tell her I'm keeping her safe and do the least restrictive hold that is effective. She tries to cooperate and my hold depends on to what extent she is able to cooperate. We established her "safe place" (on the couch, or bed-a padded place), where we can work through it. The key was for her to know that I'm helping her work through it, that I know it just happens and she can't control it. We've gotten to the point where we consider the meltdowns a chance to "practice" getting control and praise and celebration of calming when it does come is part of the whole thing. I think it helps her to feel less helpless.

 

 

Thank you, we will try that. My dd also tries to bang her head on the tile floor, dive headfirst off the kitchen counter... so tormenting for all of us. Thanks for the good advice

[LaraM]

Wow, thank you so much for putting it down like that. It brought tears to my eyes because our DS5 was always soo amazingly sweet and compassionate before this started. It's hard to hear the things that come out of his mouth sometimes and hard for me not to take it personally even though I know it's not him. I really appreciate your insights though--it helps so much!

Edited September 28, 2010 by LaraM