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Rage/Tourette/Exorcist breakdowns


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Our main issue right now w/my dd, almost 6, are these episodes. It is like a pyschotic break. She starts by the loss of verbal capacity- the swearing, name calling, it moves to attacking us, loss of control of her body- kicking, hitting, trying to bite- she is 'gone.'

 

I had a lovely moring with her yesterday, she goes to 1/2 day afternoon K, pick her up w/her little sister, have to go to check-up for little sister. DD starts to tic at the appt. We leave, she wants to walk the line in the parking lot, then she 'loses' it- runs from us- cars are everywhere- I am beyond scared. Finally, I don't know how, I get her in the car, force her while being attacked, screamed at with names, into the car seat. She is flailing- the entire drive home, both little sis and I are verbally abused. I can't get her out of car-seat in the garage- I am sure I have bruises. Her body twists and turns to try and attack. Send my DH in after awhile.

 

These happen at home. Never, ever once at at school. This was the 2nd episode in a parking lot. I refuse to take her anywhere except school alone anymore. To get to school, her clothing OCD is out of sight- same 2 shirts every day- won't take showers anymore- I have to force her clothes off and put in shower.

 

We are 9 days out from HD-IVIG- I do have some lovely blocks of time with her- but it is these episodes. I don't know what to do anymore.

 

Any thoughts? Thank you.

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These sound all too familiar, I'm sorry. My son is only 3 1/2, but like your daughter, still small enough that we have to physically force some things - often to our own personal injury. I'm fairly certain my co-workers think I'm a battered wife because my insistance that my beanpole of a 3 year old caused those bruises is not exactly believeable!! :lol:

 

Something that worked for us in the past was when he got especially violent, I would wrap him up in like a wrestling hold (both arms and legs wrapped around him) and rock gently. It would take about 2-3 minutes of him resisting me, but it would always at least end the violence of the rage. Then we would sit like that for however long was needed while he continued to cry, often, I couldn't let go until he just fell asleep from pure exhaustion.

 

This worked for quite some time, until he hit a growth spurt, and he's now over half my height (yes I'm short), so I can't quite get the right hold on him anymore. At that point, we tried a "sensory swing". I think someone on these forums suggested it. It's something that would only work with younger/smaller kids I think, so it might be worth it for your daughter. It's an OT tool used for autistic kids, we found one on ebay for like $80. It's like a lycra hammock, but it hangs from the ceiling on one hook. When they get in, it's like a cocoon around them, and it hangs, so there is a very mild, gentle swinging. My SIL noted that it might mimic being back in the womb - probably not an bad analogy.

 

The very first time we tried it, the tantrum ended IMMEDIATELY. It was amazing. We've been using it for several months now, and it's effectiveness hasn't worn off yet. The fits usually end within seconds of being put in his "special chair". He'll then stay in there until he feels better. Sometimes a matter of 15 minutes or so, other times, he's in there for hours and falls asleep there. He's even started to identify when the anxiety is building to the rage point, and when he starts to get irritable will ask to go to his "special chair". Since we put the chair up, I can count on one hand the number of knock down drag em out fits we've had.

 

Unfortunately, we can't take the chair with us everywhere - so on the freakouts in the parking lot at school and the struggle into the car seat I have the same problems as you - but it does help to keep telling him the whole way home that he can go in his chair as soon as we get there, and sometimes that's been enough to calm him til we get home.

 

Just a suggestion that has worked WONDERS for us.

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Our main issue right now w/my dd, almost 6, are these episodes. It is like a pyschotic break. She starts by the loss of verbal capacity- the swearing, name calling, it moves to attacking us, loss of control of her body- kicking, hitting, trying to bite- she is 'gone.'

 

I had a lovely moring with her yesterday, she goes to 1/2 day afternoon K, pick her up w/her little sister, have to go to check-up for little sister. DD starts to tic at the appt. We leave, she wants to walk the line in the parking lot, then she 'loses' it- runs from us- cars are everywhere- I am beyond scared. Finally, I don't know how, I get her in the car, force her while being attacked, screamed at with names, into the car seat. She is flailing- the entire drive home, both little sis and I are verbally abused. I can't get her out of car-seat in the garage- I am sure I have bruises. Her body twists and turns to try and attack. Send my DH in after awhile.

 

These happen at home. Never, ever once at at school. This was the 2nd episode in a parking lot. I refuse to take her anywhere except school alone anymore. To get to school, her clothing OCD is out of sight- same 2 shirts every day- won't take showers anymore- I have to force her clothes off and put in shower.

 

We are 9 days out from HD-IVIG- I do have some lovely blocks of time with her- but it is these episodes. I don't know what to do anymore.

 

Any thoughts? Thank you.

I'm wonder, w/ the appointment after school and everything, how long it had been since she had something to eat? If my daughter goes longer than a few hours w/o food, she's easily triggered for raging.

But, the tough thing in your situation, is you had another little one to care for at the same time-eek!

I no longer take my daughter anywhere w/o back up...its a 2 person job, and often that's just in case, but its the reality we live with.

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Thank you so much for the replies. A couple of years ago, I did 10 months of Occupational Therapy with her for sensory- I know that swing you speak of! I am so glad it's working for you- sounds like a good idea.

 

I guess I am interupting her in the parking lots- I want her to hold my hand, and she wants to walk the curb lines.

If it were just she and I, it might be different. But I have a 4 yr. old in tow as well, and it is beyond scary.

I will now not ever take them both out together with myself alone.

It is just so all-encompassing. It halts all of our lifes here.

 

PANDAS16-- these 'exorcist' episodes are a part of PANDAS. I listened to a Dr. B DVD presentation, he spoke of it thouroghly- and actually said if the child was at this point, no drugs would help- go to IVIG. I did a consult with Scott Smith, same thing.

Our current DAN!/PANDAS Dr., (not Scott Smith) along with our medical insurance Dr.'s, we have tested her for quite a few things over the years. I have taken her for a 3 hour autism evaluation: They said she is no-where at all on the spectrum, but has 'mild social phobia' (LOL) Her school work is excellent, tests above average for language.

Because she can choose when to do these episodes (never in her 4 years of part-time school, never in her weekly visits to grandparents) my Dr. said 'That tells me it is not a brain tumor.'

And they are ABSOLUTELY tourette/loss of control of body and verbally/ in nature.

She actually likes school, and I think it takes every ounce of strength for her to hold it together there (and at grandparents) and it is often after these times when she lets it loose with me. I'm her safe person, I guess.

 

Yep, she had snack and drink in the car on the way there---

 

*sigh* This is so hard.

Edited by S & S
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My dd7 has meltdowns/tantrums that are usually triggered by a change or some expectation she has that is not being met. Basically she is very rigid in what her expectations are of what's going to happen next, ie. transitions. Of course, mostly at home and with me (the moms are usually the ones that bear the brunt of it, right?!). The problem is that she doesn't verbalize what she expects to be happening to me, she does goes into meltdown and loses all reasoning. And it doesn't happen all of the time, so we (mostly me!) is left to guess when, where and why. However, she is not my child that is in the process of being diagnosed with PANDAS. Although I am starting to wonder (especially now that I realize it was really bad when her sister had strep recently). Ugghhh.

 

But, what I wanted to share, is that until about 6 months ago she was in OT once a week. She started there for balance and coordination issues, but we eventually moved into lots of sensory stimulation and developing a "sensory diet" to help with emotional regulation. It certainly didn't solve the problem (for either her or dd10, my PANDAS kid), but we did get some useful things out of it. And one of those was the swinging. I don't have an indoor swing, although I have been looking into it, but any type of swinging (playground swings) can really help. It stimulates the vestibular system which is very soothing (like rocking a baby). Now, it probably won't be much help once she is completely over the edge but it might help her with her anxiety when she is starting to ramp up as airla95 started in her post about her son.

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I guess I am interupting her in the parking lots- I want her to hold my hand, and she wants to walk the curb lines.

If it were just she and I, it might be different. But I have a 4 yr. old in tow as well, and it is beyond scary.

I will now not ever take them both out together with myself alone.

It is just so all-encompassing. It halts all of our lifes here.

 

s&s -- it sounds like you could be on to something identifying the triggers. my ds used to -- and still occasionally -- does something like this. yes, it's difficult when your adrenaline kicks in too b/c you're envisioning him running right in front of a car. my ds had something wrapped up with his brother -- needing to be right near him or not hold my hand if brother wasn't. we've seen other things relating to his brother. i now think it's some OCD thoughts wrapped up in protecting his brother. that's why it's so charged b/c i really think he truly feels something terrible is going to happen to brother if whatever is not complied with -- i.e. him right next to him, him not holding my hand if brother isn't.

 

i'm not sure what to make of the only with you if there's OCD thoughts -- it could be that it's not a conscious trying to hold it together but that the thoughts only surface with you b/c of some reason. like she is more relaxed and safe so her brain is open to the thoughts where other times, she is focused on behaving etc and the brain can't allow the OCD thoughts. i'd wonder what meg's mom would have to say about OCD thoughts surfacing or not at various times -- ?

 

maybe it's not reallly the behavior but that she is only in certain situations that trigger the OCD with you and not at school or with other people. if she was in that same situation with them, maybe she actually would have the same reaction. i don't know -- just some thoughts.

 

are you familiar with The Explosive Child book? i love the technique of repeating to help calm a wild situation and during a calm time to help try to uncover what they could be thinking.

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Pandas16--Just an added note, Dr K (www.webpediatrics.com) has spoken/written about the presentation of PANDAS/PITAND -- that for some children -- he noted, they presented as if possessed. Swedo has also noted the rages, out of control episodes that can occur with PANDAS.

 

Not all affected children have the rages, but when they do it is very, very bad. In my younger daughter (11) the past 3 months have left many things broken, bruises on us, etc. There is no rationalizing with them when they are this sick. It is a very hard issue to deal with--

 

In our case, our younger d has continued to go to school, with no outbursts there, but she cannot complete any work, school has not been "grading" her now for 2 quarters. When she is home she has severe OCD including contamination issues, angry outbursts which can be destructive to the point of including things she values (her china doll collection, tv, etc.) Sensory defensive, etc. We have, thankfully, seen some diminishing of her violence.

We are doing therapy with a counselor, antibiotics (which no longer are touching this during this episode--or maybe it would be worse if she was not on them!) yikes!--hard to imagine what that would be like...steroids this time did not help...We have seen her OCD and ticcing leave (in the past) with antibiotics and steroids, until she was exposed to strep this summer. Yes, it was sudden onset of symptoms, and this is ENTIRELY out of character for her--Her teacher last year told us she was the least dramatic child in the class. "Sweet reverent child" another teacher told us! For 10 years usually always smiling, happy and very kind--literally, as things progressed in this episode, within one month of strep exposure she was at a level of raging that would qualify her for the disability label of emotionally disturbed in the public schools. This is a very real and sad reality with PANDAS/PITAND or PAN...Hope that gives you a little more of a picture of this side of the illness.

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My dd7 has meltdowns/tantrums that are usually triggered by a change or some expectation she has that is not being met. Basically she is very rigid in what her expectations are of what's going to happen next, ie. transitions. Of course, mostly at home and with me (the moms are usually the ones that bear the brunt of it, right?!). The problem is that she doesn't verbalize what she expects to be happening to me, she does goes into meltdown and loses all reasoning. And it doesn't happen all of the time, so we (mostly me!) is left to guess when, where and why. However, she is not my child that is in the process of being diagnosed with PANDAS. Although I am starting to wonder (especially now that I realize it was really bad when her sister had strep recently). Ugghhh.

 

jen -- what you describe is very much like my ds. he had many issues with cognitive inflexibility and just right OCD. it took me some time to understand "just right OCD". he's doing much better with these issues as he's healing. i'm sorry that you are seeing these issues in a child other than your pandas child. i don't write this to upset you -- just to let you know these are two of my pandas child's major issues.

 

my older son started showing symptoms in the fall. they were quite mild -- i really think a non-pandas parent would have written off as a phase. we hemmed and hawed and went back and forth. i remember once sayng to dh -- what, are we just waiting for him to fall apart to go to the dr. shortly after i said that, he started with severe 'bad thoughts' at bedtime. the dr diagnosed multiple infections. he's responding well to treatment.

 

i think there is more evidence coming in that once you've got one pandas, you've got to take symptoms to heart in another.

 

good luck.

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Pandas16 - I have another one of my theories...I believe that the strains of strep change and morph as the years go by causing more and different types and often more severe symptoms.

 

I am 100% certain that I had pandas as a child. I am 40 years old. From 1972-1978 I was on an antibiotic every month for two weeks out of each month. I had strep a lot. In the 70's they gave antibiotics out like candy. Not anymore. It is very strict because doctors fear super bugs. I got my antibiotics for unexplained fevers. I hallucinated. I had night sweats. As a small child I didn't want to go to dance class because I thought I looked fat in leotards (I was stick thin). In 1979 I got pneumonia and my brother got his tonsils out for chronic strep. As soon as my brother got his tonsils out, my fevers went away. In high school I developed very minor OCD. Checked the stove every night. Made sure cabinet doors were closed. Under stress, I couldn't handle any object or corner pointing at me. I would suffer from leg pains that were very painful. I never said a word to my parents. In college, it all went away, on its own, quite suddenly. It went away soon after I grew an inch in college. I guess it was my final growth spirt. Unusual for a girl to grow in college but I did.

 

My mother, who was an RN at the time, showed me the detailed charts of my illnesses. She wrote down everything. There is no doubt in my mind that I had pandas.

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jenb - the best part about our swing, is that it TOTALLY works when he's raging uncontrollably (albeit, it can be a bit tricky to get him in when he's flailing) but it's been a GOD SEND! I can't recommend it enough if your child is still small enough for it to be effective!

 

S&S - I have many of the same challenges as you do, since I also have a 4 yr old Non-PANDAS daughter. So when I have the two of them out together, it can be tough if he sets off. Our parking lot issues sound alot like yours. My son has to walk the pavement markings for the parking stall all the way to the end before he can get into the car, and if he messes up, he either freaks, or has to start over to do it again. If we pass any landscaped medians in the parking lot, he has to walk all along the curb around the median as well.

 

We've put a little system in place for our daughter. She's only 4, but we've explained to her that her brother has a "sick brain" and it makes him do strange things sometimes, things that we wouldn't allow either of them to do if he wasn't sick. If he doesn't do these things, his "brain gets angry" which causes all of the fits. We were careful to not say that HE gets angry, or naughty, etc...to make sure she understands it's not her brother's fault, but his sick brain. It was the most age appropriate way we could explain it to her.

 

From there, we set up a system - if we're out in public without daddy, and Broderick starts one of his episodes - we have a code word and that's her cue to grab my purse strap (or shirt or some part of my body or clothing) and not to let go. This allows me to have my hands free to carry the flailing maniac (and I say that with love) while still being able to keep tabs on her. If she does well, she gets a small treat. It's been very effective.

 

It worked like a charm over Christmas when my son wanted to see Santa at the mall as a reward for getting blood work. He did great, we even had dinner there and they both earned dessert for eating well. When we stopped at the cookie store - ###### broke loose. Apparently the guy didn't hand him his cookie the right way. I immediately gave our code word, scooped up my son, and my daughter grabbed the bag of cookies, our Santa bag, and held on to my belt loop as we retreated through the mall and parking lot to the car.

 

It's terrible that she has to be so grown up to handle this, but she's been a trooper. It's a suggestion that might work for your other child.

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jenb - the best part about our swing, is that it TOTALLY works when he's raging uncontrollably (albeit, it can be a bit tricky to get him in when he's flailing) but it's been a GOD SEND! I can't recommend it enough if your child is still small enough for it to be effective!

 

S&S - I have many of the same challenges as you do, since I also have a 4 yr old Non-PANDAS daughter. So when I have the two of them out together, it can be tough if he sets off. Our parking lot issues sound alot like yours. My son has to walk the pavement markings for the parking stall all the way to the end before he can get into the car, and if he messes up, he either freaks, or has to start over to do it again. If we pass any landscaped medians in the parking lot, he has to walk all along the curb around the median as well.

 

We've put a little system in place for our daughter. She's only 4, but we've explained to her that her brother has a "sick brain" and it makes him do strange things sometimes, things that we wouldn't allow either of them to do if he wasn't sick. If he doesn't do these things, his "brain gets angry" which causes all of the fits. We were careful to not say that HE gets angry, or naughty, etc...to make sure she understands it's not her brother's fault, but his sick brain. It was the most age appropriate way we could explain it to her.

 

From there, we set up a system - if we're out in public without daddy, and Broderick starts one of his episodes - we have a code word and that's her cue to grab my purse strap (or shirt or some part of my body or clothing) and not to let go. This allows me to have my hands free to carry the flailing maniac (and I say that with love) while still being able to keep tabs on her. If she does well, she gets a small treat. It's been very effective.

 

It worked like a charm over Christmas when my son wanted to see Santa at the mall as a reward for getting blood work. He did great, we even had dinner there and they both earned dessert for eating well. When we stopped at the cookie store - ###### broke loose. Apparently the guy didn't hand him his cookie the right way. I immediately gave our code word, scooped up my son, and my daughter grabbed the bag of cookies, our Santa bag, and held on to my belt loop as we retreated through the mall and parking lot to the car.

 

It's terrible that she has to be so grown up to handle this, but she's been a trooper. It's a suggestion that might work for your other child.

I'll bet that makes your daughter feel a lot safer, too- knowing what her job is in that situation.

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This was the presentation of PANDAS for my son. What we did not realize was we were interrupting an ocd or keeping things from being "just right". After 6 months, we saw a psychiatrist who diagnosed Intermittent Explosive Disorder. Well, that certainly sums it up. We placed our son on lamictal and it did help. It took the explosions of hitting, kicking, biting, scratching, spitting down to a level of more verbal assaults and redirected his anger at a bean bag chair. He was also in therapy at the same time trying to get to the root of the problem. We haven't seen a bad explosion since Sept 2010. Starting abx really helped put out the anger. When I see inflexibility and irritibility, I call our doctor. We've had a couple of abx changes.

 

One thing I came to recognize is that if things didn't go exactly as he thought they were going to then, BOOM. He could not tolerate surprises or any change in the agenda. He had such inflexible thinking. He never had a problem at school. To this day, I cannot tell you how that could be.

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