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How do you deal with the behavior outbursts that our kids can have?  

 

Our son gets very obstinant and has tantrums to where he can't breathe and is very unpleasant to be around.  He is 8 but it is like he is still 4 when these outburst happen.  Last night he had one that lasted through basketball practice, which made us late to practice and still had him mad at bed time.  

 

So now to my questions.... Are there any good books that deal with these issues that are targeted for kids with issues and/or self-regulation problems?  Does counseling or behavior therapy work?

 

How do you deal with these meltdowns if you need to be somewhere?  Should we just keep the child home?  I told my SO next time he throws a fit like this we should just keep him home and the other should take his twin to practice.

 

I know his emotions and needs overwhelm him and 90% of his reaction is out of his control but still I don't think it is right to allow his problems to dictate the whole house and cause others issues too (other boy is very anxious about being late).

 

We just feel his issues are pulling the house apart and we need to learn how to cope and new strategies for dealing with him.

Thanks,

Jen

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How do you deal with the behavior outbursts that our kids can have?  

 

Our son gets very obstinant and has tantrums to where he can't breathe and is very unpleasant to be around.  He is 8 but it is like he is still 4 when these outburst happen.  Last night he had one that lasted through basketball practice, which made us late to practice and still had him mad at bed time.  

 

So now to my questions.... Are there any good books that deal with these issues that are targeted for kids with issues and/or self-regulation problems?  Does counseling or behavior therapy work?

 

How do you deal with these meltdowns if you need to be somewhere?  Should we just keep the child home?  I told my SO next time he throws a fit like this we should just keep him home and the other should take his twin to practice.

 

I know his emotions and needs overwhelm him and 90% of his reaction is out of his control but still I don't think it is right to allow his problems to dictate the whole house and cause others issues too (other boy is very anxious about being late).

 

We just feel his issues are pulling the house apart and we need to learn how to cope and new strategies for dealing with him.

Thanks,

Jen

 

If they are actually meltdowns, which this sounds like, because a tantrum doesn't usually last terribly long, and you can distract a child having a tantrum, have you checked for mycoplasma pneumonia? It can cause these rages. I know this doesn't answer your question, but I thought I would throw this out.

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I have been there done that with my children with PANDAS. I do believe that generally it is out of their control, but it does tear a family apart. One thing I found helpful, though, honestly, in the midst of severe PANDAS rages, it did not help a huge amount, was a technique by a man named Kirk Martin. His website is celebratecalm.com He was local to my area a few years ago and used to give talks at churches and schools. He has now moved to TN, I think but still travels and does free talks. I would try to see one or maybe you can get some ideas from his website. His CD's are great, I bet, but since PANDAS is often out of the child's control, it would not always be helpful and it is a lot of money to spend in the unique situation of a PANDAS kid.

 

Another idea is the series of workbooks "what to do when your brain get stuck". There is an anger one (maybe what to do when your temper flares"/? perfect 8 yo level.

Best wishes. I know this is so horrible to happen in a home.

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He is 8 but it is like he is still 4 when these outburst happen

 

.... Are there any good books that deal with these issues that are targeted for kids with issues and/or self-regulation problems? Does counseling or behavior therapy work?

 

How do you deal with these meltdowns if you need to be somewhere? Should we just keep the child home? I told my SO next time he throws a fit like this we should just keep him home and the other should take his twin to practice.

 

I know his emotions and needs overwhelm him and 90% of his reaction is out of his control but still I don't think it is right to allow his problems to dictate the whole house and cause others issues too (other boy is very anxious about being late).

 

i am a huge advocate of the book The Explosive Child by Ross Greene. he also has Lost at School. he has a website -- i think 'lives in the balance'.

 

also, When Labels Don't Fit is very good to help with the lenses you see your child through and also give some strategies into how he may think and function.

 

the premise is that the problem is lagging skills and unsolved problems. yes -- i 100% believe your child has neurological/biochemical issues -- mine is quite 'classic' pandas -- however, we ALSO need strategies to get through the days. you can work on skills and problems also. my son is close to yours in age, 7, so we also have the issue of what is missed developement due to being bombarded by pandas for a few key developmental years and what may have just been his traits/development/quirks anyway.

 

the first -- emegency plan b -- gives ideas of what to do in the midst of an outburst to not make it worse and to not get dragged into it. then, not during the outburst you can try to problem solve solutions.

 

also, we have just in the past 6 mths found a 'needle in the haystack' psych. those previous ranged from useless to detrimental b/c they just didn't get it. we also discussed how in some manners he is 7, but acts like 4. she said, yes -- usually kids who have issues are 3 years behind in areas. the good news is they progress -- an 8 yr old like a 4, is frustrating; when he's 12, he'll be like 9; so a 25 yr old, like a 23 isn't so bad -- yes, many years in between -- but it will even out and he'll progress each year!

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I wanted to add that we canceled all sorts of things last minute due to her explosions and other kids had to miss all sorts of stuff. We dropped out of life for literally years due to this.

It has created such feeling of resentment (though the other kids have been remarkably understanding) and frustration and even jealousy~~ do what ever you can to stop this! I totally completely agree that they can not always control it. any skills you both or your children can learn to cope will go a long way to diffusing these. I wish so desperately we had been firmer and had some coping skills before it all hit the fan! Those skills come in handy with non-PANDAS kids, too ;)

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vermontmoms-

 

I am sorry you are dealing with this.

 

Smarty has recommended a book, The Explosive Child, which has some really good techniques. The one that she told me about, and works great to head off issues, is the repeating technique. So this is basically when your child is starting to ramp up about anything, you just repeat what he is saying back to him, calmly. This lets him know you have heard him, but you do not get engaged. It has worked really well for us, at times. It also makes life easy when, as a parent, you have somewhat of a set script. Here is an example. Lets say my daughter is starting to get mad that her sister moved something of hers:

 

Daughter- Julia moved my art set!

 

Me- Julia moved your art set?

 

Daughter - YES! WHY DOES SHE ALWAYS TOUCH MY STUFF? I WANT MY ART SET TO STAY WHERE I PUT IT!

 

Me- She always touches your stuff?

 

Daughter- YES!

 

Me- You would like it to stay where you put it?

 

Daughter- yes.

 

 

This can go on and on (and on and on and on). But I have seen it really work to diffuse situations, not all of them, but some. Try it (it will even work with your spouse!!)

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OK, so now I am going to add more. We have had explosive behavior come with pandas with both of my girls. Like pow pow said- it can be really, really hard. It can ruin the whole family dynamic, and really be tough on the other kids, and on a marraige. I am the first one to attribute EVERYTHING to pandas, and say that it is out of their control. However, I, in the past, have done way too much to accomodate my kids, and that has not helped the situation.

 

This summer we did three weeks of intense therapy at USF for both girls, for ocd. Both had strep in April. One was NOT in a great place at the time- ocd and temper tantrums, and all around difficult behavior (much can be traced to the ocd). So, instead of working directly on the ocd with her, we worked on "compliance". Now, I want to tell you that the folks at USF get all the hard cases. What my dd did, which mortified me (trying to run away, temper tantrum on floor of their office, hitting me)- did not rattle them in the least. So- I know some parents here may say this won't work- but I can tell you that they know their stuff. This method moved my dd from completely difficult, to fully compliant in a few weeks. I will say, she was not at her worst when we were there, but she was close.

 

Basically what we learned (and DUH- I sorta felt like an incompetent parent- but after being ravaged by pandas our family really needed this help to get back on track) is a time out program. Very similar to what you probably used when they were two and three. I will try to write it in steps, like we did.

 

First- set up some rules. Sit down and tell all of your kids that things are changing, and be specific about what will be expected from them. Describe the time out program.

 

So it goes like this. IF/ when your child misbehaves, they are give ONE warning to stop the behavior (any physical aggression does NOT get a warning- goes straight to the time out).

 

If the behavior does not stop, they are given a time out. A time out should be about 4 minutes. It should be in a place where they cannot see TV, and are slightly away from the center of the home, but within view/hearing of you. This place should be set up beforehand, and shouldn't change unless you are not at your home. We use the steps in our hall (right outside the family rm/kitchen).

 

Now of course, you say- there is no way my kid is going to the time out- right? Well that was our issue too- but here is the deal. Until they complete their time out, they get nothing: no food, no one speaks to them, no tv, NOTHING. You need to be tough, and you may need to be hardcore- but there is no flexibility here. The psych reminded us that a parent is only required to give a child a warm, safe place, send them to school, and give them three meals (not snacks and goodies)- EVERYTHING else is negotiable. Now, for my kids, they HATE that no one will talk to them, so even at their worst, within 15 minutes they go to their time out.

 

We never did this, but at the end of their time out, if warranted, you may give them a punishment. It should be short term and fit the crime (maybe no TV the rest of the day?)- it should not be a long drawn out punishment.

 

There is very little need for discussion about what they did- because they KNOW what is right and wrong.

 

This may be very hard for the first week or two. You may consider paring down your schedule, and if you have multiple kids, having someone available to take the others to their activities.

 

But- it is worth it to get a reasonable amount of "compliance". We have used it on our older dd too (age 11), it works beautifully for both. To be honest, after the initial week- we have barely had to use it.

 

When our kids are in an episode, I know they are completely freaked out and panicked. But I think we need to start to give them control back, and to expect it. I know this sounds hard- but sometimes they need a little "tough love". We also found a "tough love" approach is what worked best for their ocd. I know I have two very "normal" kids, then pandas hits, and they are riddled with ocd and afraid of their shadow. They are panicked and are lashing out. I have the natural tendency to want to make everything better, and end up accomodating too much, and everything becomes a mess. Using this tougher approach has been major in getting our family back on track. It also prevents a more unified front for us parents, we don't need to get engaged in any tantrums- we have a script and we stick to it. There is no arguing needed.

 

I hope this makes sense to you. I certainly would suggest considering a therapist to work with you and your dh on a behavoir modification program. It can be hard at first, but in the end it makes their life much happier.

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Hi,

My Ds8 started exhibiting this explosive rage about 3-4 weeks after having pneumonia. We were even in the mall when he had a full on melt down in the store, thrashing on the ground, yelling about throwing things through the window, etc. His pandas dr. Recommended doubling his preventative dose of augmentin from 500 to 1000 per day. Within days we saw a huge improvement and completely back to "normal."

This was in December and everything was fine until last week.after he had gotten another virus, so we are back on the double dose. I know this will not work for everyone but is just our experience. One more tip, "after every illness replace all toothbrushes in house as they can harbor strep and dishwasher won't kill it. Not sure if that's true, but better safe than sorry."

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On top of the things others have mentioned - like checking for current infection and modifying abx if needed, here are somethings that have helped with us "in the moment" so to speak.

 

Our son is smaller, only 4, but the main thing we did to try to keep family normalcy is make sure that my daughters schedule/activities were impacted as little as possible. She always made it to soccer, birthday parties, etc...regardless of what her brother was doing. We always had a back up plan to get her where she needed to be.

 

This was important for us so that our son knew that his behavior affected him more than anyone else in the family.

 

The other thing that we have, which has been a huge blessing is a sensory swing. They're used for autistic kids, and the one we have is rated up to 80 lbs I think. It's basically a lycra type hammock that hangs from the ceiling on one hook. When our son is having his worst meltdowns (like the ones you describe) he goes to his special chair to ride it out. Almost 100% of the time it ends the meltdown instantly. Depending on how bad the meltdown is, he stays in his swing anywhere from minutes to hours (he's even fallen asleep in there).

 

I'm not sure how big your son is, but it might be worth looking into, it really gave our son a safe place to go, and helped him learn that we know he can't help the meltdowns, but it's still not acceptable behavior.

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The explosions were the worst thing to deal with. Still are but they happen infrequently now, rather than daily. I recommend The Explosive Child also. It really helped us. When DS is in an explosion, really nothing we can say will help. We say little and let it blow over. That usually means DS runs up to his room, stomps around, door slams, throws pillows, maybe name calls us (stupid or idiot). If we ignore the behavior (and believe me its hard to), he settles down quickly, then comes down very sad, sometimes crying and wants hugs and love while saying how sorry he is and he doesn't know why he acted like that. Then we give him a consequence and he accepts it. Sounds easy enough, but its not. Maybe we should take a trip to Florida.

 

I do know why he "acted like that". Interruption of ocd behavior causes it. Many times, we can point out the behavior, which is usually a 'just right' thing and he'll stop and do what he should be doing. But, there are times when you cannot predict that he'll be able to let it slide and BOOM! Most of his big meltdowns occur in the evening.

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I just want to second everything that DCMom said. The best thing we can do for our families is to seek some sort of CBT or ERP therapy. I am speaking mostly in terms of those who have children with raging and defiance issues. I have three PANS children, but it's my daughter who rages and has ODD that has absolutely torn our family apart. The best thing we did was to go to USF for their CBT program last summer. We are going back for a refresher during spring break and also to take my son (who didn't go last year). It is so helpful for the entire family and they really understand PANDAS and children. Even if you can't make a trip to Florida, find a program near by and give it a try. JMHO.

 

Dedee

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My approach when our kids have explosions or other behavioral problems, is to first take a step back from the details or particulars of the issue, situation, or incident(s) and from there try to assess what's going on in a fundamental/big picture sort of way.

 

I always assume the behavior has a reason. Sometimes just stepping back and seeing the situation will illuminate the reason and I know exactly what needs to be done to address it or avoid future occurrences. Avoidance is a key strategy re: explosions. If I know what is likely to trigger explosions, I can problem solve them with my child (or without if necessary) to try to avoid future explosions. But, that's not always possible and triggers are not always predictable so it's only one part of the overall plan for blast containment. I find it helps to discuss these things, and maybe even come up with a "meltdown" plan when the child is calm. Once the meltdown's in progress, it's too late and it's probably best to let it ride out before trying to address the issue that kicked it off or the behavior that resulted, with your child. Now, I don't mean you shouldn't try to defuse the immediate situation-- by all means, do! You've gotten some good tips about that already.

 

Is your child's PANDAS well controlled or is there a chance he's either flaring or has some underlying infections? My ds was in a cycle of improving dramatically, then backsliding and exploding again. Further investigation revealed some chronic infection issues and some marked immune deficiencies. He can't maintain the gains because he can't clear the infections. We're en route to IVIG and then T&A (he's got very large tonsils and with all of his immune deficiencies his tonsils are like hotels for bacteria). His explosions go away completely when his PANDAS treatment is working. When he backslides, that's usually our first sign. His explosions are OCD-related (he can't handle things going wrong or being different than he expects or plans, mistakes are terrible, computer errors, etc. all set him off). My ds's biggest OCD fear is actually talking about his OCD & fears, which makes my job significantly harder when I try to problem solve it or do erp with him. We have to start erp with that until we make enough headway he's able to start providing info about the rest. I don't know if that is relevant, but thought I'd mention it in case your son is having worries he's unable to express that are leading to the meltdowns.

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Nmama-

 

While I do agree mostly with what you have said, I do want to chime in...

 

I think it is very important that the goal for our kids is to live in a normal, well behaved, age appropriate way. Because of this, I think taking steps to avoid "triggers" is a very slippery slope (one that I know I have gone down) of accomodating, even sometimes in advance, their ocd. In our house, most tantrums come back in a direct or indirect way, to ocd. Accomodating ocd in any way, especially a strategic way- is really not a great idea.

 

I don't necessarily think this is what you are talking about, and certainly anticipating a trigger, and coming up with solutions (with your child) that are not avoidance, before the trigger situation, is the best bet.

 

I could discuss this all day :(

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