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Parenting through a Rage


mbruin

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Hi all!

 

This is my first time posting so I'll say Hi! and Thank you! for all your collective support and wisdom I have been drawing from!

My son just turned 9 and we have been dealing with PANDAS since he was 4. Of course, down here our first round of doctors/neurologist/psychiatrists/psychologists adamantly believed PANDAS didnt exist. Translation: they knew nothing about it so told us we were out of our minds. Happily, we persevered and have a great team, mostly up North - and have just started to see Dr. B in CT. My son also has Asperger's, so between the typical Asperger meltdowns and the PANDAS rages, we feel totally off the rails.

 

Starting last August (09) our sweet, bright, affectionate son once again started to backslide with great inflexibility (a "nice" way of saying oppositionality!) , tantrums, obsessing over computer etc;. He maintains beautifully at school but I literally could not get him to the car before he started to rage. Rages changed for us. They took on new, scary features, such as threatening to kill us, getting (butter) knives out of the drawer, acting possessed, swearing curse words I had NO idea he knew, let alone that he could be so sophisticated and creative with them. His pupils dilate and he talks in a really creepy voice. So yes, we slipped into the Exorcism Syndrome, though didn't have those words at the time. I and his younger brother had a strep infection in November that increased all of this, though we had Ben on weekly Zithro for a long time. We finally found out that he has contracted Lyme disease - which of course compounded everything. This sounds so cut and dry when I read it but it has been a living nightmare. All of our energy has been used to quell the rage, protect our 5 year old from it, live through them, try anything to help him contain them so he didnt hurt us or himself or his poor little brother.

 

We have not found a way to parent well through the rages. First of all, my husband finds it very difficult to see our son control it at school and when he gets what he wants etc; but not with us. The tantrum almost always follows a request for something that is denied, or a limit being set or a demand: ie: brushing teeth, getting dressed, turning off computer, not having another treat, I brought the wrong treat to pick up, anytime I say no. We are consistent but flexible, warm but firm, really knowledgeable at this point about all the challenges. Yet, it is so frustrating when the rage always follows these moments.b/c it still strikes the chord of a spoiled kid not getting what he wants. We KNOW thats not it, but it still pushes buttons, as does the disrespect and nasty name calling etc;.

 

So this is my question:

1. How do you protect any siblings from the rages and how do you explain it? How do you think it is effecting them?

 

2. How do you NOT lose your temper when it is the bazillionth rage of the day, you can get nothing done, the sibling needs you, and you are being "beaten up" verbally and sometimes physically? We end up bringing our son to his room, after giving him several options, and eventually if he cant stop hitting or hurting me or saying evil things, I close the door and hold it - which makes him insane but eventually it allows him to quell and return to a semi-normal state where he is soooooo sad and apologetic and says the most self hateful things no matter all my assurances and understanding. We tell him he's loved, that this is a brain sickness we are trying to heal, that we understand it feels out of his control, that nothing he can do or say changes our love for him, to remembe rthe imtes when he is his true self and this doesnt happen - etc etc.

 

There ARE times when we just lose it - and feel BEYOND guilty afterwards.

 

I would appreciate any stories, techniques, support anyone can offer. I feel so isolated even though I have many friends and family who care, but no one can relate to this bubble of torment we are currently living in.

 

Thanks in advance-

 

Steph

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I get exactly the same kind of rages here. Especially over the computer, ice cream etc.

I haven't figured it all out (triggers/PANDAS/Spoiled kids etc) and my son has a more severe autism with the PANDAS so he really cant say all the mean things or he would-I think.

I have put latches that lock on the outside of all our bedroom doors.

He can only have access to the computer if I approve it.

I have and egg timer next to the computer and tell him how much time he has and what we are doing after that to help transition him.

You can have the computer for 15 minutes, bring me the timer when it goes off...then we are going to the playground.

I usually save computer and treats after doing less preferred things, homework before computer,

Dinner and gym class before ice cream.

End of the day rewards... where he will not have to move to a less preferred activity.

Same routines for morning afternoon and night-predictability helps for us.

 

We also have a schedule he makes each day-he chooses the order of all the things he has

to get done and writes it in a day planner. He has to work around fixed activities, classes.

For my son it is control issues and OCD, so if he feels that he gets to decide what he does and when

(even if it is 2 things we want him to do-if he gets to choose where it goes on the schedule -he is less likely to rage about it)

 

If he does go into a rage I time him out in this room with the cake timer.

He is 10 and strong- so if I feel in danger, I will lock the door from the outside till he calms.

He is usually trying to make me upset and get his way-so if I am not watching him bite himself and reacting to it, he will just stop.

If he is trying to bite me the door puts the end to that too.

If he does actually bite me which happened last week, around 6PM-I sent him to bed right there and then and locked the door.

No dinner, computer nothing. His father brought him dinner later after he calmed.

We had him apologize to me later.

 

I know a lot of people here have a good family therapist to help them deal with these issues.

Might be worth doing to get some more strategies.

I have behavior specialists working weekly in my house with my son and I.

They help me a lot with schedules and transitioning him to keep him on task without tantrumming.

They usually put in firm boundaries, help him through transitions, ignore maladaptive behaviors

(unless you are in danger) and highly reward and praise good behavior.

Good luck with everything.

Hope it gets better soon,

 

Carolyn

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Steph, I can relate I will PM you. We are living the same ###### with the opposition and rages, misdiagnosis and unknown treatments for years. My son also carries the Aspergers diagnosis if it is truley ASD or PANDAS rage not sure but the behaviors are the hardest symptom to deal with. It can wreck havic on your home and marriage and the siblings. I will let you know what we are doing. We have head the same holding it together at school and losing it as soon as he walks into the door. However he has slipt a bit at school a few times and they may see more then they are willing to admit.

 

Michele

Hi all!

 

This is my first time posting so I'll say Hi! and Thank you! for all your collective support and wisdom I have been drawing from!

My son just turned 9 and we have been dealing with PANDAS since he was 4. Of course, down here our first round of doctors/neurologist/psychiatrists/psychologists adamantly believed PANDAS didnt exist. Translation: they knew nothing about it so told us we were out of our minds. Happily, we persevered and have a great team, mostly up North - and have just started to see Dr. B in CT. My son also has Asperger's, so between the typical Asperger meltdowns and the PANDAS rages, we feel totally off the rails.

 

Starting last August (09) our sweet, bright, affectionate son once again started to backslide with great inflexibility (a "nice" way of saying oppositionality!) , tantrums, obsessing over computer etc;. He maintains beautifully at school but I literally could not get him to the car before he started to rage. Rages changed for us. They took on new, scary features, such as threatening to kill us, getting (butter) knives out of the drawer, acting possessed, swearing curse words I had NO idea he knew, let alone that he could be so sophisticated and creative with them. His pupils dilate and he talks in a really creepy voice. So yes, we slipped into the Exorcism Syndrome, though didn't have those words at the time. I and his younger brother had a strep infection in November that increased all of this, though we had Ben on weekly Zithro for a long time. We finally found out that he has contracted Lyme disease - which of course compounded everything. This sounds so cut and dry when I read it but it has been a living nightmare. All of our energy has been used to quell the rage, protect our 5 year old from it, live through them, try anything to help him contain them so he didnt hurt us or himself or his poor little brother.

 

We have not found a way to parent well through the rages. First of all, my husband finds it very difficult to see our son control it at school and when he gets what he wants etc; but not with us. The tantrum almost always follows a request for something that is denied, or a limit being set or a demand: ie: brushing teeth, getting dressed, turning off computer, not having another treat, I brought the wrong treat to pick up, anytime I say no. We are consistent but flexible, warm but firm, really knowledgeable at this point about all the challenges. Yet, it is so frustrating when the rage always follows these moments.b/c it still strikes the chord of a spoiled kid not getting what he wants. We KNOW thats not it, but it still pushes buttons, as does the disrespect and nasty name calling etc;.

 

So this is my question:

1. How do you protect any siblings from the rages and how do you explain it? How do you think it is effecting them?

 

2. How do you NOT lose your temper when it is the bazillionth rage of the day, you can get nothing done, the sibling needs you, and you are being "beaten up" verbally and sometimes physically? We end up bringing our son to his room, after giving him several options, and eventually if he cant stop hitting or hurting me or saying evil things, I close the door and hold it - which makes him insane but eventually it allows him to quell and return to a semi-normal state where he is soooooo sad and apologetic and says the most self hateful things no matter all my assurances and understanding. We tell him he's loved, that this is a brain sickness we are trying to heal, that we understand it feels out of his control, that nothing he can do or say changes our love for him, to remembe rthe imtes when he is his true self and this doesnt happen - etc etc.

 

There ARE times when we just lose it - and feel BEYOND guilty afterwards.

 

I would appreciate any stories, techniques, support anyone can offer. I feel so isolated even though I have many friends and family who care, but no one can relate to this bubble of torment we are currently living in.

 

Thanks in advance-

 

Steph

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Hi and welcome. Sorry you and your family are suffering with this debilitating illness. Every day can be a struggle and although I have not walked in your shoes, I wear the same brand and quite honestly they hurt my feet too! I will offer one form of advice that has actually worked for us during a rage. My husband grabs the hammer and my sons safety eye glasses and they hit the backyard quickly where he bangs the heck out of rocks! Yes, it has worked for us. They go outside, separate from what is causing the anxiety, separate from me and his younger brother and he bangs and yells and bangs. We tell him that the PANDAS is making him angry and he needs to get the anger out so he can feel better. This may not work for everyone (we live in an area where he can do this in our backyard) but there may be other options for your family...a punching bag, think of something that distracts him. We have had to alter things over time. There was a period of time when rubbing a special rock calmed him down. We would tell him to grab his rock and find a quiet spot and rub out the anger and frustration.

 

I also understand your concerns about protecting the younger sibling. It is hard. We are very likely dealing with PANDAS in the younger one too and he has always been a difficult child so putting the two of them together is tough sometimes. They've both been in the yard banging away at the rocks many times! Motrin is our friend too. If I could tell it was going to be a difficult day right off in the morning, they get a dose.

 

As for the behavior at school versus at home, this has always been an issue for us too once the PANDAS started. The teacher would never see the rages (they would see increase in ease of distraction, inability to focus, increased impulse control problems, etc) but the rage, no. This symptom was luckily saved for us so DH and I would get into the discussion of this is just him not getting his way. It was not until we were absolutely positive that strep was causing the problem that we realized that he likely fights the rages all day, along with the tics, and then just lets it all out when he gets home. It is like a volcano building up the pressure all day until it finally erupts WHERE HE FEELS SAFE TO LET IT ERUPT. I think that is the key. He feels safest with us so we unfortunately get to see the worst part of PANDAS.

 

Hang in there. Fight the good fight...you are a wonderful parent, don't doubt that!

 

I understand you have other issues you are dealing with too which I have no experience with. My dear childhood friend has a son with Aspergers. They do have someone providing some excellent therapy for them, specifically for him and his younger sister to help with their interaction. Maybe look into someone in your area who may specialize in this?

Edited by saidie10
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Boy is that the million dollar question or what? And...have you taken over my life? Real quick...cause I'm short on time, but I'll check back later because I'm sure there is much more expert advice coming your way.

 

What works for me the best, and by no means is great, is I try to control it by not trying to control it. If I see he has crossed that line in his mind, I just try to keep everyone safe. I do my best to leave him alone, and ignore him. My son will run outside so that works as a cool down period...I just have to pray not much property damage happens before the cool down. Luckily he is too scared to run to far from the house at this point. Of course there is only so much you can take before you feel like screaming, but this is my goal. (And I really need to remember to watch that left hook!! :blink: )

 

I try to remind him afterward how wrong everything was, and have him say sorry. It really is a very fine line to walk, wanting them to know this isn't really them, and not there fault, but wanting them to accept responsibility at the same time. In the past, after the rage was gone and I could talk to him rationally, I have taken something away from him that he likes. If he wants it back he has to earn it by getting so many good deeds. Anything and everything can be a good deed. This helped me make the point it was wrong, but allowed him to regain some self-esteem at the same time. This way he has to do something to make up for what he did, but it is easy, and he can realize that he really does more good things than bad. But I haven't done too much of this lately, the thing he liked became contaminated at one point, and now, I'm just too darn tired!!

 

As far as keeping everyone else safe, I feel like I follow him around waiting for the snap, especially if all the variables are right. For my daughter...if he has crossed that line, I send her to her room, and she knows to lock the door. I tried to explain it in the beginning that his brain like a dvd skipping during these moments, but I probably should go over the rage aspect again with her. She herself has been diagnosed with it now, so I'm hoping she will gain more compassion in the long run.

 

 

And remember, it is really easy to say this but not so easy to do. It really is whatever that you find works for your family!! Hope it helps and you got some ideas!!

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I'm sorry that you're going through this. Unfortunately, I don't think there's an easy answer to your question - if there was - I'd have published it by now and made millions!!!

 

Our PANDAS son is still younger, but we have all of the same problems. One of our challenges is trying not to give preferential treatment. Our daughter sees that her brother "Gets away with things" and doesn't understand why. We've explained to her that he does these things because he's sick, and he can't help it, etc... But we still make a point to dicipline him and have consequences.

 

We've done some of the same things other have done. We turned the lock around on his bedroom door so we can lock it from the outside if we need to seperate him. I've always also been able to hold and rock him in a certain way that tends to minimize the rage. We've just ordered an autism sensory swing chair - we're hoping that mimics what I do enough that he can use it to self soothe. Unlike others on here, our son has many rages at school. They've identified a special corner for him to go to. He's allowed to go that corner anytime of the day, there is a soft red chair there, and he can sit, hang out there as long as he needs. The teachers won't bother him and when they see him go there, they keep all the other kids away. We've found that's been helping - even heading off rages at times if he feels overwhelmed, he goes to his "safe place" and isolates him self from everything. I think we're going to try to have this concept worked into his IEP. (We have our IEP meeting next week.)

 

We've been working with behavior therapists on the rages, and after witnessing several - they've figured out what many of us already have - they're not doing this for attention, like most other kids do. But it's important that they see consquences - so they don't manipulate the situation later. When our son has a breakdown that is violent (hitting, kicking, biting others) he loses one of his favorite toys. He has to apologize to everyone involved - the other child, his teachers for being naughty - and even the school director for disrupting his class and their day (we're big on teaching that actions have consequences that reach farther than those involved). And he can earn his toy back if he has a good day the next day.

 

It's worked for us well -we've picked him up from school at times where he'll walk right up and tell me which toy I should take away that day since he was bad.

 

There is no easy answer - but I think we all just continue to do the best that we can.

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I treat the rages as though they are seizures- something that happens to my daughter that she hates, but needs help to work through. Fortunately my PANDAS child is the youngest, so my other kids have actually turned into helpers with her. But when they were younger, they'd just get out of the way!

 

You need to remember that the things you say "no" to that trigger the rages, could very well be not just things he wants, but things his OCD needs and the anxiety of not satisfying the "need" is powerful.

 

We.ve talked to my daughter about it when she is not in a rage- let her know we understand that this is something that is difficult for her to control, but assure her we will help her when it happens. We laid some ground rules (which works most of the time)- She must get away from her grandmother when this happens, so she doesn't hurt her. (gma is a bit frail)

If you can, help him make some sort of plan (during the lucid times) that will help him stay safe and the rest of the family too, and will give him a sense of being able to deal with these episodes. We've come to treat each episode like a chance to practice getting control.

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This post throws me back into the "nightmare days" when our house felt like a war zone and my wife and I were totally shell-shocked. Our son (like many on here) had been such a mellow, pacifistic kid before PANDAS began tormenting him, then that all changed during his Summer 2008 exacerbation. Can hardly bear to dredge up those memories, but here are some quick thoughts.

 

  • Is your ds9 on any psych meds? These made our son's rages 10 times worse. In our case, ativan was the worst, but klonopin was similar, and zyprexa didn't help matters. When we tapered off the psych meds, things got much better.
  • We made it clear to our son early on that hitting or hurting Mom, Dad, or his brothers was not acceptable no matter what. He seemed able to grasp this and the consequences after initial warnings: we told him we would have to take him to a hospital if he couldn't control himself enough to avoid attacking other people.
  • In our son's case, the basement became his "haven" when his rages exploded beyond control. He would go down there, pace, and kick and punch things. He trashed the basement at one point, but better objects than people, we figured.
  • Our biggest concern back then became a fear of him hurting himself rather than others. Frankly, he channeled most of the destructive energy on himself: hitting himself, punching concrete walls, etc. We tried desperately to find some way to distract him during these episodes. For our son, reading to him was the only thing that worked very often: we read the entire Dresden Files series (11-12 novels) about 10 times, my wife and I taking turns.

 

Looking back, I don't know if this was right or fair, but we did lay down an ultimatum: if he started hurting family members, seriously injuring himself, or refusing to eat (he had terrible anorexia at this point), we would have to take him to the hospital for his own protection and the family's protection. That threat haunts my conscience sometimes, but it did seem to work for our son: it brought him back from the brink. (Although there were times where we feared we'd have to follow through on it, and that was a horrifying thought.)

 

Wish I had more to offer. What ultimately eliminated the rages for our ds was serious PANDAS treatment: high-dose abx and IVIG. Best of luck, and our prayers are with you!

Edited by Worried Dad
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We used to use a method we called being put "on privileges" this is before pandas dx, and it worked pretty well, but may not work for a pandas rage. If ds was having specific things that were causing problems and it was going on for some time, we basically took all his privileges away, and he had to earn them back with specific good behavior. Since TV time, computer time, play dates, anything special, was a privlege, he only got something like that if he earned a tickets (or points) . So for example, if the behavior was doing simple expected requests like - homework time, or eating dinner without being rude about what was being served, and he got thru it and politely ate and cleared his plate, he would earn 15 minute on the computer. Like wise, if the computer is the issue, then usually its getting off it that is the issue, so he would get an additional 5 minutes his NEXT computer session if he got off when requested the first time. (and we always gave him a warning like- computer time is up in 3 minutes..)

 

You can pretty much design your own program. But, I'd keep is simple and specific. I would usually put him on the program for 2 weeks, but the benefits would last way beyond. Granted this was pre pandas (or maybe not - since we think he's had some pandas-y times in his history..)

 

So,its a stick and a carrot. He'd be looking for ways to earn TV and computer time after the first couple days. But then again, may not be the ticket for a pandas rage...and initially - he HATED it (of course he did - we were exerting control over him and making sure he knew that living in this house had many privileges that he took for granted). so, I'd consider it and maybe a very specific version of it to start if you think its something he could handle, which may not be the case if he is irrational (as I know my ds could be when exacerbating).

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rages - by far the worst and scariest of the PANDAS symptoms (except for maybe anorexia) in my book. I actually call them terror attacks, because they seem a product of an extreme fight or flight reaction. I don't really know how you can parent this extreme loss of control. My ds sometimes behaved as though rats were eating him alive. I know we didn't always do the best job. We did a lot of trial and error and made a lot of mistakes over the years. Your post brings me back to the worst of it last year when this was happening for 2-3 hours at a time daily, sometimes twice a day. What it came down to for me is a no tolerance for hurting himself. I would physically get involved if he is banging his head or trying to pull out eyelashes, but other than that I tried to to just stay in the room with him and make sure no one got too badly hurt. Little brother is a pro by now so when he sees ds start to ramp up he just goes outside or to his room and locks the door. The hardest for me was when he was getting physical with me. He just wanted me to fix it, make it stop. Sometimes he would ask for something to break so we'd get something safe. sometimes he seemed to be having tic/chorea movements in his arms or legs and he would ask for me to hold him. A few times we called the police out to the house just to "shock" him back to reality (it worked, the cops were great). We did not punish him for the loss of control. We learned that holding him "accountable" in his moments of clarity didn't help, because he literally would lose his mind during these rages and feel awful afterwards. It felt like he was being punished enough already by the experience itself. I know the guilt you talk about. You are human and can't always respond the way you would like to. The couple things that helped us as this became an everyday pattern was "tag teaming" when possible. Whomever had the most emotional energy to deal with the rage at the time, me or dh, that person would. Also, I tried to remind myself that this was like vomitting, a symptom of a sickness he couldn't help and that made him miserable too. I knew that once he got to a point he could blow his nose and drink a glass of water he was on his way "back to earth". I have to say, like worrieddad, the rages did not go away until we started getting serious PANDAS treatment (for us that's Biaxin and IVIG). He has only had 3 rages in the last 5 months, and truly they weren't even that bad/long. We still have a lot of anxiety and depression but I'm hoping the rages are a past memory...

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This has been the hardest part for us. The rages are so scary and unpredictable. As I look back now I sometimes wonder how my marriage survived. There is no simple answer as to how to handle it. Unless it affects your life and you live it will you truly understand the fear, heartbreak and turmoil rages create. Like your child mine was always fine at school. It was her home and comfort zone she was able to release all the anxiety she held in for hours at school. It was NEVER pretty. I never punished her for something she could not control.I sheltered my son the best I could and always told him his sister loves him and she is sick. We have not had rages for awhile now but I truly feel your pain and hope you find relief soon.

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Hi,

GREAT Topic!!!

I remember the Bad days too well. YOU are not alone!

 

I love love love the hitting rocks idea from Sadie 10 ! What a creative idea! This redirects the energy

pent up to a physical action to help get rid of the tension and action can be shared with by parents or sib,

too.

When my son was very sick with pandas, we bought him a drum set but put it into the basement rec room, so he could let loose and bang away to the sounds of heavy metal rock. This redirected energy into music actually got him

interested in taking guitar lessons, now he has three. He also now uses his ipod to play music at the clinic for

check ups..he hates seeing drs...esp after seeing so many when he was desparately ill.

 

Meanwhile, give the hugs and tell them that you love them , and know in your

heart that they will get better in time and you will get them back someday!!

 

Hope for healing,

Mustang Carole

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mbruin-

 

I could have written this myself about our situation. Change the age to about 2 and now an 11 yo son!! OH my stars. Down to the lyme dx and triggers!!!

 

All I can offer is prayers. We am looking for something effective. If he's operating on all cylinders techniques work; if not oh, dear.

 

Feel free to email me, if nothing else, for an empathetic ear.

 

I am reading the replies right along with you!!

 

Dawn

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Hi,

GREAT Topic!!!

I remember the Bad days too well. YOU are not alone!

 

I love love love the hitting rocks idea from Sadie 10 ! What a creative idea! This redirects the energy

pent up to a physical action to help get rid of the tension and action can be shared with by parents or sib,

too.

When my son was very sick with pandas, we bought him a drum set but put it into the basement rec room, so he could let loose and bang away to the sounds of heavy metal rock. This redirected energy into music actually got him

interested in taking guitar lessons, now he has three. He also now uses his ipod to play music at the clinic for

check ups..he hates seeing drs...esp after seeing so many when he was desparately ill.

 

Meanwhile, give the hugs and tell them that you love them , and know in your

heart that they will get better in time and you will get them back someday!!

 

Hope for healing,

Mustang Carole

 

 

Mustang Carole--nice to see you on the board! You are encouraging--tell us again how and what you did to handle this? When did your dear son get better and to what do you attribute it to? I need a little encouragement tonight--thanks.

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