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tu4four

Handling Raging Behavior

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It's me, again. Muddling through another rage. I have the Explosive Child and have read through that, although it has been a little while and maybe I am forgetting something. But how do you handle raging behavior when it is aggressive and targeted? It's not like we can just stay out of her way. And it's really not like we can avoid behaviors that send her into a rage. As I mentioned earlier, asking dd to do anything from homework to a shower brings on a pretty wild and horrid, but predictable, rage. I get that she cannot wrap her mind around transition right now and that she is not CHOOSING to be so irritable or to be unable to do anything I ask (although I do think she has a little bit of learned behavior going on sometimes, I'm just not sure when).

 

What I have no idea about is how to handle that rage. I have three other children who are often targeted once she gets to that place. I have them go upstairs and lock themselves in the oldest's room or lock themselves in our bedroom, but she continues to rage and beat doors with heavy objects, tear things off of the walls, make holes in the walls, call all of us stupid, wish we were never born she hates us, why do we have to be her family, screaming bloody murder to get away from her, leave her alone...you get the picture. Gutteral (sp?) screams that, frankly, I'm surprised have not caused our neighbors to call the police. I cannot lock her in her own room to calm down because when I did that she managed to tear the door open and damage the frame to her door. I often restrain her, which only continues the rage, or often escalates it but does hold her in one place. But I can't do that all day or evening.

 

Right now she is in the shower after having sprayed the entire bathroom with the shower head out of anger and trying to get me. If I walk back in there, she is going to issue another string of insults and yell and scream some more. I told her that she would have to dry up the bathroom, but really....fat chance of that happening. And, as you know, no amount of, if this, then that will work to motivate her.

 

So. How do you handle this kind of behavior?

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I sympathize with your plight completely. When our dd was at her worst last fall, she trashed our house, threatened to kill herself while holding a knife, spat at us and told us she wished we would be murdered. In her case the extreme rage was a result of using the sari Celexa (for ocd), before we really understood the negative effect it can have on many children with PANDAS/PANS. Our p-doc worked with us to keep her from being hospitalized, which in our case meant more meds. We put her on Risperdal increasing to 1 mg/day and quit the Celexa. It did work to calm her and kept her and us safe from harm. Many times I felt nervous if she wasn't directly in front of me, for fear she might do something to me. I'm not advocating the use of psychotropic medication; I wish we hadn't started it sometimes, in retrospect, because it makes it more difficult now that she is being treated with abx, to really know what is working. Given our knowledge at that time, intent to keep her out of a hospital and prevent serious damage to her person and our home, we used the Risperdal. And it worked.

 

My take on these meds is to assess your situation by looking at what you can and can't deal with as a family. Can you keep her and her siblings safe during this exacerbation? What are the alternatives...hospitalization, having a relative live with you (someone strong enough to physically contain her), having her siblings stay with a friend or relative? Like you, we physically held our daughter at times to contain her. Like your daughter, ours hated it. Manhandling my child like that goes against every fiber of my being. I felt appalled and guilty but I did it anyway. In the end I'm glad she is of an age that she is small enough that I could do it. What we literally did was grab her arms from behind and cross them over her chest, try to lower her to the floor in front of us and then hook our legs over hers to prevent flailing. I learned to cant my head sideways because dd would bang her head repeatedly back and forth. (My nose is still intact:). Usually we'd talk calmly and agree to release one arm if she agreed to sit still, then the other arm etc. The worst part of the process was in the five minutes after dd was contained - it was when her fear was at its peak. After ten minutes I think the adrenaline starts to decline - nothing bad has happened after all - and there is some small reduction in fear and rage.In all we probably had to do this 7 or 8 times and then the statement "I will hold you if you can't calm down" became enough to stop the destructive behavior.

 

Dd still takes risperdal 0.75 mgs a day, 6 weeks into abx treatment. I tried to lower it recently to 0.5, but her irritability increased noticeably. Every week that passes though, she is a bit better so I'll keep trying the lower dose until she - hopefully - doesn't need it.

 

You have my heartfelt understanding and wishes for your the return of daughter's health and happiness. This is a heartbreaking illness to go through - for everyone involved.

 

Heather

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Lamictal. Hold him exactly like Heather describes above. Treatment with abx and IVIG puts the damper on the raging for our son. When he's doing well, he gets angry but he doesn't go crazy with rage. Name calling, spitting, hitting, kicking, scratching, head butting. I am acquainted with all those, unfortunately.

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My daughter was exactly like yours two years ago. I know you are hoping that this will magically and instantly go away with the right treatment. The truth is that this will most likely be a gradual thing. I am not trying to discourage you. I do want to give you something to think about though. Once you get a treatment plan in place, antibiotics etc.. I hope you will seriously think about a CBT / ERP program. This was the only thing that changed our daughters behavior. Yes this is a physiologic response but your daughhter MUST learn the appropriate coping skills and your family must learn the appropriate responses to her reactions. The only place for that is a center that focuses on OCD in kids. We have been to Rothman Center in Florida a few times. It has saved our family. At one point we (like you) were at our breaking point. I was so worried about our other two children and how this was affecting them. My husband and I were constantly fighting about the best way to handle things. USF / Rothman has helped our family more than I can say. You can't put a price on family peace. There is also a program in Rochester Minosota that is similiar to the one at Rothman. One of the therapist that my daughter saw moved there to work at that program. She was an awesome therapist.

 

I know that right now you are thinking of getting her infectious issues under control and that is good. But I would go ahead and start thinking in the direction of a formal program. Anyone who has done it will tell you how life saving it can be. You can always just call and talk with them about the program. Dr. Storch is the head of the program and the best and nicest guy there is. My heart goes out to you. Your daughter sounds so much like mine. My daughter is even now going through a regression as she is sick with some sort of virus that has her in a flare. She had a rage last night but thankfully they don't last very long anymore. I KNOW your daughter can get better. It's goinig to take a combination of medications and therapy. We still struggle with sensitivity issues with her hair and cloths too. I am hoping she will grow out of that or that as the antibiotics continue to heal the lyme, those things will improve. Please stay on this board and ask for help anytime you need it. You need support to get through this difficult time. You are a good Mother and you are doing the right things to get your daughter better. Don't feel bad if you need to use medication temporarily to get her through this crisis time. My suggestion would be lamictal. It works well for rages and has few side effects. Keep us all updated. Best of luck.

 

Dedee

Edited by Dedee

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This may not work for you, and it only sometimes works for me- sometimes.

If I can get my dd to sit next to me, I will hug her very, very tight, and shower her with love- kissing the top of her head over and over again, calm, soothing sometimes baby talk voice with compliments, saying 'it's okay' over and over and over again. This can be while she is cursing, and fighting me with all her might. When it's successful, the wind leaves her.

You were extremely honest in your posting, I will be too.

Rage, violence and abuse in my house from my dd has just about undone me.

I have near emotional nervous breakdowns on this issue. I can put up with anything else, but this.

I have a younger neurotypical child that I cannot or will not allowed to be abused.

We did go to risperadone.

And, it worked for about 4-5 months.

I then tried to take her off, and we came back quickly to unmanageable living.

We have treated this child's health issues, and pans and Lyme, for a long time.

I was scared to do both risperadone and infection (antibiotic) treatment at the same time- worried about system/liver overload, so we paused all antibiotic and herb treatments while exploring psy. medications-

Again, it worked for awhile. And, we needed that. We were at red alert, like you are. It is your duty to protect your other children- and, in my dd's case, removing her to another room caused her to self harm- when she is in the rage-

I am now very close to going back to antibiotic treatment, while trying to maintain a lower dose of risperadone - we are in a very difficult home life situation again.

Hang in there- sending you good thoughts-

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While the "Explosive Child" was very helpful to us, my DS was older when the "rages" hit him . . . 12-13 . . . and the rages were mostly turned inward, on himself, rather than outward, toward others. Still, they were difficult, disruptive and painful to watch and listen to.

 

Like a couple of others here, however, I will say that Lamictal was a true turning point. Somehow it turns down the "volume" on the emotional response to triggers. It didn't make DS any less himself or "zombie" him out like Risperadol or Zyprexa had done; it just made him somehow less "married" to his anger or his indignation. It gave him the ability to apply age-appropriate perspective . . . to take a step back and assess the situation more rationally and less emotionally. Given all that, I give it 2 thumbs up!

 

Hang in there!

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Check for mycoplasma pneumona, bartonella and babesia. MycoP is walking pneumonia, and is an atypical pneumonia. Many people do not know they have it, and even high IgG can indicate current infection (despite what many docs would like to tell you.) It can also be a co-infection of lyme and/or tick-borne. Bartonella and Babesia are being found more and more commonly, and can cause neuropsych symptoms. Incidentally, if you live in the Hudson Valley (where we lived when I think we all got bitten), I was recently reading an article that said that babesia is becoming a big problem there. All 3 can cause the kinds of rages you are describing. My DS has/had all 3, and since starting treatment quite a few years ago, he no longer has the horrendous, sudden terrible rages like he had. Yes, he has periods where he become slightly ragey, but he is able to get himself to his room or to a safe place, and can now warn us that he feels it coming on. You are going to want to have an LLMD and/or ART practioner help dx the bartonella and babesia, because the blood testing is not terribly accurate (just like all lyme testing), and there are lots of false negatives. It may have to be dx by the clinical picture. Here are several things to help make the dx (they are not inclusive, but do indicate possible infection:)

 

Bartonella: heel pain, stretch marks that look like cat scratches...primarily on stomach, back upper arms, but can be anywhere

 

Babesia: enlarged spleen, elevated liver enzymes (babesia affects the red blood cells).

 

Other things we did, which helped a lot (and you can certainly do in the meantime if it turns out your child has any/all of these conditions (while you treat):

 

1) 5-HTP (tryptophan) (we had to play around with the dosage...we give 2 at night and 1 in a.m. now)

 

2) handful of peanuts and/or 1 - 2 T of peanutbutter (the best I can figure is it is full of tryptophan + oil, so the oil helps it go straight to the brain.) At his worst, these stopped his rages literally within minutes! We stumbled on this in despiration, when we were trying to find protein options besides only meat. And, my son HATES peanuts, so I really don't think this would have worked if it wasn't really going to work, because I had to threaten to take away priviledges, allowance, etc, if he didn't eat the peanuts I left outside his room (he would have attacked me if I had gotten too close.) Incidentally, we made it a little more tolerant to him, by giving him 2 or 3 M&M peanuts if necessary, and then followed up with slightly larger amount...really didn't take much peanuts. I knew we were making progress when I realized I was no longer carrying peanuts around in a plastic baggie in my purse.

 

3) Lamictal helped our son, too, but he was originally given them because he was diagnosed with seizures (interestingly, they were not epileptic, but were seizures.) He had multiple eegs over the years, but one where we pulled him off the lamictal, and saw the difference (we found that the lamictal slowed down the suddeness of the rages, so we had time to see it coming on, and could help him realize he had to get to safety and/or we got the peanuts into him

 

3) When DS was in fullblown rage, CBT would not have worked, BUT, so we would try to completely get away from him. When we had a second or two of reprise, he had just enough ability to run to his room, but would require me to remind him.

 

PM me if you have questions.

Edited by tpotter

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Just to add in regards to Bartonella, rage is a common symptom though sometimes it is very hard to test for. as Tpotter wrote Other symptoms include stretch marks (although for my DD these did not show up until we started treatment), foot sole pain especially upon waking, and bone pain. Sorry if I posted this before but have you tried Burbur? from Nutramedix?5 drops in water up to 4 times per day is what we are doing and it works really well.

 

My daughter tested negative for Bart through several tests with Igenex and Quest, but we started treatment anyway based on symptoms, using Rifampin and Zithromax. When I saw the stretch marks come out four days after starting I was so grateful that we made this decision and did not just go by the blood work alone. She definitely had a bit of a herx when we started this combo but it wasn't too bad. Rifampin combos are good for lots of stuff including strep, you have to do liver tests and CBC frequently when on it.

 

A too high dose of MTHF was contributing to rages in my DD. When I significantly reduced the dose and frequency they went away.

 

I hear you in regards to the other kids, I have a 3 YO, its scary.

 

do you have an MD working with you and what state are you in?

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We were where you are two years ago, and for way too many months as we waited for insurance to clear a procedure, finally went ahead with IVIG, and within days she started (as she said) "feeling happy again." The raging tapered off within literally a few days after IVIG. Our d had been destroying the house, attacking, throwing lamps, holes in the walls, yep, very hard situation--and the weeks before IVIG we had her live with family friends--

It was horrible.

 

We are there again, with an episode that went from bad to worse since September.

Our doctor added Augmentin XR 1000mg to the Azithro 250mg she was taking daily, it is helping, we see improvements with the two--

much less raging, far less, but now ticcing about every two to 4 minutes, whole body jump. OCD is still there, but less ODD. (When not in an exacerbation she is a lovely sweet child. She was symptom free for all of last year.)

 

She has been on the two antibiotics for about a week now this time, we saw improvements beginning around day 5. We are hopeful but waiting and will do more if needed.

 

You asked, what to do to handle the behavior--I am a firm believer that if it is PANS/PANDAS then it is a must to try to treat it ASAP, so the living horror is minimized for you and your family. I mean physical PANS treatments to get at the root of the problem if you can.

 

Antibiotics, and increasing antibiotics as in Saving Sammy, or layering, then on to other treatments if necessary.

 

For us, (and we have done counseling/therapies, etc...) the best treatments have been antibiotics, steroid bursts, IVIG. The counseling could not reach my d when she was in a severe episode. We gave up on trying to restrain her as it only escalated the situation in our case. It has been just about as bad as it gets at the worst of it--and I know your sorrow and tired-ness all too well.

 

Please know there are other parents walking the same path and holding out hope -- this is an illness that we know can be treated.

 

Hold on, if it is PANS and is treated, they do get better.

Edited by T.Mom

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I know there's a lot of discussion about steroid bursts, but if this is bartonella or other lyme co-infection, steroids can make them worse, and lyme et al, like to thrive on steroids. I agree that getting dx and treated immediately is really, really critical. We, too, have been on Rifampin for quite some time. LLMD told me to d/c it for DS17 and myself about 1 month ago, but within about 2 weeks, I realized that some symptoms we were getting might have been related, so I started Rifampin back up again.

 

BTW...just to give you an idea of how long this all takes...we've been getting treated for lyme, bartonella, babesia, erlichiosis, mycoP for 2 1/2 years now. PANDAS tx started 1 1/2 years before that (although DS17 was sick since 8 years old, and DS20 probably got it much earlier, but we didn't know). While you're getting this all tested, I would highly recommend that you also test for viruses, such as HHV-6, Coxsackie, Parvo, and other "common" childhood viruses. Our kids weren't able to clear them, and they're all part of the deal with my family.

 

But, all that being said, as I mentioned previously, the "true" rages that we used to get, are almost gone. And, what is left is able to be controlled. So, there is definitely hope.

 

Big huge cyber hug going out to you and to your children right now!

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My granddaughter is experiencing the rages I see described below. 6 years, almost 7. First low dose IVIG almost 4 weeks ago, we are hoping to be approved for hi dose. Bicillin shot last week seemed to acerbate rage. Positive for Band 41 Lymes with Labcorps. Bartonella type rash on bottom for years. Think Mom passed her Lymes along to all three kids unknowingly. Mom diagnosed Lyme and Babesia positive with Igenex last year. For 6 year old using magnesium baths, lemonade, she eats peanut butter, what about hyperbaric chamber to help through this detox stage? It's caused by spirochete die off, right? Herx effect? Interesting thing is brother, 4 yrs, has not had much of reaction from same dose IVIG, but does swallow pills, so his antibiotic much more affordable and therefore, he gets it more.

 

Grandaughter doesn't want to put on much in the way of clothing either. Only eats in sporadic calm moments. We use meloxicam for anti-inflammation, she was prescribed Zoloft but not sure that is working on the big problem. She does have OCD. Now are trying Atarax to calm and Rifampin to boost the Suprax (as we can afford). Compliance is a big issue, she only takes what liquid doesn't overly flavor orange Gatorade, lemonade.

 

Any thoughts appreciated, bless you all.

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The Rifampin is important to treat the Bartonella, which could definitely be a source of the rages. Be forewarned, it can take years and often requires medicine AND herbals to fully irradiate it.

 

Has she been tested for yeast overgrowth? It's a common problem in these kids and important to check if she has mood issues.

 

Also, you might try eliminating food dyes from her diet to see if that helps. I believe orange Gatorade has Red 40 in it. Red 40 makes my son cranky and mean.

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Thank you on the yeast check idea and the Gatorade warning. We are getting started on rifampin I hope. I was told the compounding pharmacy could flavor it orange, but it ended up cherry so maybe we can get her to believe her lemonade is pink. Between my daughter's Lyme's and her 6,4 and 3 year old's PANDAS, CVID, and Lyme's, there is little time to digest all this new information. These forums really help.

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