How do I handle behavior problems with a Pandas kid...

[qannie47]

My Matthew is in a moderate episode, and has been for awhile. This time around his mood fluctuations/temper tantrums/defiance/now swearing....is just terrible. He has a twin with sensory issues who feeds off this..ugh. I am stuck somewhere between empathy for his Pandas and high frustration in regards to these behaviors. I feel I can't just let him have full run with it, but yet....I can see that the kid has not ability to reason or compromise at this time. He is not responding at all to time outs, positive reinforcements, other consequences....Do any of you have any tips or insights as to how to keep this child in check on some level while we weather this storm? We are falling into a negative rut...the entire household.

[smartyjones]

i am a huge advocate of the book The Explosive Child by Dr. Ross Greene. You likely don't have too much time to read a book right now -- but that book jumped off the shelf into my hands one day right when i needed it after a particularly troublesome day with ds opening the car door while i was driving. Dr. Greene has a website www.livesinthebalance.com that may offer some quicker help.

 

you may want to search the forum for some help from dcmom -- i don't know that i have a good keyword b/c she has a lot of posts -- but she has some gems about keeping order in the house during troublesome times.

 

good luck.

[Dedee]

Our family was at the breaking point. It was constant chaos and fighting between my husband and I on how to handle things. The only thing that brought sanity back to our lives was the CBT / ERP program at USF. They work with the child and the parents on how to handle the situations and get everyone on the same page. It is wonderful. This is such a difficult situation and almost impossible to figure out on your own. Most psychologist can't figure it out either. USF understands PANDAS and they totally get this whole situation. They get the OCD / Rages thing like no one else does. The fee is reasonable and there is a place to stay right next door that is very affordable. I suggest it to anyone who feels like things are falling apart. I am so sorry your family is suffering in this way. It is truly a horrible experience. Praying things improve for you all.

 

Dedee

[pr40]

I asked the same question perhaps 6 months ago. you may want to see the responses. There are a few things to try but even Explosive Child suggests that not all kids are ready for the program. Translated to PANDAS, when flaring, you cannot do much. And so we find ourselves precisely where you are between the intolerable behavior and not-being-able to do anything.

One thing did help us, actually two. Methylation supplements and figuring out food sensitivities. That way we lessened the duration, the amount, and the intensity of rages and THEN we could make good use of Explosive Child techniques and therapy.

This is not a leaner process by any means but cyclical. you get to do it again and again.

in our case, dd is 4 years older and we try to physically separate them as much as we can.

[lynn]

You know, I agree that there are behaviors that our kiddos just can't control. But on the other hand (and I am channeling DH here) there are some behaviors that can't be permitted. For us this was distracting the driver (or grabbing the wheel) and hitting the parents (mostly me.) Where we are (and this is fluid) is that we pick our battles, and for those things we can't permit, we make the penalty truly terrible (e.g. losing his phone for the weekend, shudder, gasp.) But then, if that works, and it does for the most part, doesn't that beg the question, if he can control these things, why not everything? My answer, not vetted with the rest of the household, is that the energy expended to not do the terrible things (made worse by the strong temptation to do them because they are terrible) is so great that if everything else were added on, life as we know it would grind to a halt.

 

But I still don't like any of our answers. This is a continuing question for us and as a result our policies are not consistant (bad). But we are only human, and doing our best. If anyone finds a magic bullet, kindly let me know!

[4Nikki]

Not really sure if this is helpful. DD when nuts breaking and throwing things at the onset. As we started to understand the cycle and that lying down enabled her to self control more. We guessed she has some sort of compulsion for breaking that seem to calm her so at first we started giving her thinks she could scatter that was easy to pick up. Then we started to give her sheets of paper she could tear and that seemed to work well. Most of the time now if she feels it starting to happen she will lie down to self manage it. Also at first I was restrainer her arms and holding her down so she would crash into things and more importantly knock herself out with a blow to the head, chock herself or pull out her hair. Believe me if we let her she would pull her hair out by the roots. But then I learned that just blocking her arms from reaching her head she was less combative. I encouraged her to scream and yell to vent. You might want to inform the neighbor, our called the police. So again, I'm not sure if this is the good way to do things because we are still waiting for the behavior consultant to start servicing.

[Mayzoo]

The million dollar question with PANDA kids is this: Is their behaviour willful and within their control? If it is not within their control, punishment is a waste of time and energy IMO. Of course, some of the behaviours we see are willful and within their control, then behaviour modification/punishment is worth the effort.

 

Right now, my kiddo get very emotionally upset, stops moving and slowly builds up steam until she explodes and throws any object in her hand or that is nearby. I am not trying to stop the emotional upheavals (out of her control IMO), but I am trying to direct her to stomp her feet instead of throwing things (within her control IMO). If she stomps her feet instead of throwing stuff, then we will have a party about her handling her feelings more appropriately.

 

When you figure out 100% how to tell which it is, please let me .

Edited May 21, 2013 by Mayzoo

[Mayzoo]

Strep titers are a great first lab, but if they are negative, that does not mean you are not dealing with PANS. My daughter was a classic presentation with an active strep infection at the time of dx; however, her strep titers have always been super low. However, she responds beautifully to abx treatment, and regresses badly when a taper down is attempted. This simply means another antibody is the main trigger for this particular group of kids; hence, the PANS dx. Further digging has revealed my kiddo is, as her immunologist states, a very "complicated case." Naturally, nothing with her medical has ever been typical .

Edited May 21, 2013 by Mayzoo

[queenmother]

Is it bad to admit that it helps me to hear that there are others out there dealing with the same issues we have had?

I have found that, as long as she is not harming herself, we do better to give her paper and time alone. Many, many, many sheets have been shredded and it does seem to calm her. After a while, I go back to check on her and she will be watching tv and knitting or skyping with friends and it is almost as if the episode never happened. However....

if it is a really bad episode (and we have had many like the ones you described), things escalate quickly. I have learned to hurry and get a little orange juice with 2 little drops of valerian root tincture in it, and a Motrin or Advil (NO tylenol). If I can get that in her, it takes the edge off. Then I give her a capsule of 200 mg GABA combined with app. 75 mg magnesium citrate. This has been working for us.

Of course, there have been times that I could not get her to take the juice and pill.....times that she has thrown it in my face. Times that defy all human comprehension. When my kid is in one of those flares, there is no way to negotiate or reason with her. She is not in a state of mind that trying to talk with her will help. I have learned to let her vent, just let her get it out, without saying or doing anything that will provoke her further. It is unbelievably hard to sit and take the abuse but I have come to realize that she really cannot control it. If your child was having a hypoglycemic crash, would you punish him? If he was having a diabetic episode, would you punish him? This is almost like some kind of verbal seizure and I can't bring myself to punish her for a medical condition that is out of her control. I did not feel this way in the beginning but I have grown to see that this is truly out of her control.

Interestingly, we have not seen any of these episodes since starting doxycycline for the active mycoplasm and bartonella so I am hoping we are at the least knocking down the infection. I have read that mycoplasm and bartonella both cause explosive, raging behaviours. And at the recent Bartonella seminar that our PA attended, they said that most self-injury is caused by Bartonella. Interesting stuff.....

Anyway, as you guys should know by now, I am a HUGE fan of GABA/mag citrate. It helps my daughter calm down amazingly well.

QM

[Mayzoo]

Strep titers are a great first lab, but if they are negative, that does not mean you are not dealing with PANS. My daughter was a classic presentation with an active strep infection at the time of dx; however, her strep titers have always been super low. However, she responds beautifully to abx treatment, and regresses badly when a taper down is attempted. This simply means another antibody is the main trigger for this particular group of kids; hence, the PANS dx. Further digging has revealed my kiddo is, as her immunologist states, a very "complicated case." Naturally, nothing with her medical has ever been typical .

 

Sorry, ignore this comment for your thread. Somehow I got it on the wrong thread.

[airial95]

Mine are younger, so it's a bit different for us - but like others have said, we choose our battles. While we know that it is beyond their control - we have one overriding philosophy when it comes to discipline: the judge isn't going to give a hoot about PANDAS or that they can't control it when he's sending them to juvie (or worse - a mental ward!).

 

We have one hard line that is unbreakable - no physical aggression. If they hit, kick, spit, punch, scratch, etc... that is automatic time in their room alone until they calm, with us restraining them if needed (nothing harsh - like Nikki described), they can yell and scream all they want, just no physical violence. And there usually is a consequence of some sort (no video game time, bed early, etc...). When they are not physical, just verbally disrespectful (which is more often the case now), we actually don't punish them for that - instead, we send them to their room (or another "safe" place). There, they can yell and scream and call us stupid to our hearts content - in the privacy of their own room. When they yell disrespectful things at us we respond calmly - for example "I hate you". "Well, that's unfortunate, because your father and I love you very much."

 

We've been at this for over 3 years, and it's a system that has worked well for us. After the rage is calmed, we have a discussion about how hurtful words can be as well as physical actions. Oftentimes, they don't even remember what they said. But knowing they have a safe place to vent has been helpful for us.

 

My son just got IVIG for the first time in April (it's been amazing), and about 2 weeks ago, he came up to me, snuggled me on the couch and said - out of the blue: "Mommy, I just want you to know that I love you and Daddy very much. Almost as much as I love Millie (the dog). I know I say mean things to you sometimes, and that I say 'I hate you', but I don't really. I don't like to say those things, but Harvey (his OCD) makes me."

 

That moment made all of those rages seem bearable.