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Hi,

 

My son goes to a therapist weekly. Frankly, I don't see talking with someone and using strategies as particularly helpful. When my son acts up, there is no reasoning with him. And I don't see therapy of this sort as helpful with neurological conditions. Am I crazy?

 

Anyone else have the same frustrations?

 

Michael

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Hi,

 

My son goes to a therapist weekly. Frankly, I don't see talking with someone and using strategies as particularly helpful. When my son acts up, there is no reasoning with him. And I don't see therapy of this sort as helpful with neurological conditions. Am I crazy?

 

Anyone else have the same frustrations?

 

Michael

 

I'm not qualified to comment on whether you are crazy or not. <_<

 

As far as behavior modification (ABA has been a miserable failure for my child), my opinion is that it depends on the behavior you are trying to modify. If you are trying to get somebody not to sneeze or breathe or tic, then it will not work. However, if you are trying to get them to sneeze, breathe or tic in a different way, you might have a shot at that. My daughter has erratic fight or flight reactions with unknown triggers, apparently driven by some internal mechanism. I'd like her to stop that. She'd like to stop that. Everybody seems to agree it would be good to stop that....but, she can't stop. However, over the years (she's 14 now and this has been going on nearly her whole life) we/she have developed some things that can help make these episodes shorter and less intense. (haven't found meds that can do that yet, but we're open to trying that as well). You're right that there is no reasoning with them when they are acting up, and that's because what they are doing is NOT REASONABLE!! and they know it, too. If they don't know why this completely overwhelming storm takes possession of them, they certainly cannot be reasoned out of it. When it happens to my daughter, I do not try to talk about what is causing it (this sometimes makes it worse anyway). What seems to work the best for us is to 1st of all get her to a safe place where she won't hurt herself, or anybody else. She has violent outbursts during hers, so this is important. I approach with a "sorry this is happening to you" philosophy and try to set up some kind of regulatory pattern...chants, clapping, rocking, tapping, something rhythmic, tends to focus her brain/body away from the episode to automatically following a pattern that calms. My daughter cannot speak, so we don't discuss it, but I have explained to her that I know she doesn't want to lose control like that and I will help her when it happens. I hope, eventually, she'll be able to employ these methods for herself to gain self control when it happens...someday.

 

But, it has just occurred to me that we might not be talking about the same thing when we say "behavior modification"....

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We've been in therapy for a year now. My son is 7. We have switched therapist because two of three Dr's weren't good with OCD. The third was nice but not covered by insurance. I am with you on the fact that these kids neuro issues make them unable to think through what they are doing and saying at the time of emotional dysregulation. The psychiatrist really feels we need the therapy with the meds. The therapis even told me when he was having such problems from the meds the therapy was not being effective.

Hi,

 

My son goes to a therapist weekly. Frankly, I don't see talking with someone and using strategies as particularly helpful. When my son acts up, there is no reasoning with him. And I don't see therapy of this sort as helpful with neurological conditions. Am I crazy?

 

Anyone else have the same frustrations?

 

Michael

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We've haven't tried the therapy route yet. I'm waiting to see how school goes this year since we have the dx, p. abx, and have done IVIG. If she is still having severe anxiety issues we may give it a try.

 

When my dd is having a raging episode, there is absolutely no reasoning with her. She is not in control of the anger or her reactions. We've tried everything from one end of the spectrum to the other. So far, the only thing that seems to work is picking her up and putting her in the ice cold shower. It seems to snap her out of it enough that we can at least get her to calm down. It sounds absolutely horrible but it has worked for us when nothing else has.

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We've haven't tried the therapy route yet. I'm waiting to see how school goes this year since we have the dx, p. abx, and have done IVIG. If she is still having severe anxiety issues we may give it a try.

 

When my dd is having a raging episode, there is absolutely no reasoning with her. She is not in control of the anger or her reactions. We've tried everything from one end of the spectrum to the other. So far, the only thing that seems to work is picking her up and putting her in the ice cold shower. It seems to snap her out of it enough that we can at least get her to calm down. It sounds absolutely horrible but it has worked for us when nothing else has.

 

 

When it was really bad in June, I found the only thing I could do to snap him out of his state was put him in front of a TV.

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We've haven't tried the therapy route yet. I'm waiting to see how school goes this year since we have the dx, p. abx, and have done IVIG. If she is still having severe anxiety issues we may give it a try.

 

When my dd is having a raging episode, there is absolutely no reasoning with her. She is not in control of the anger or her reactions. We've tried everything from one end of the spectrum to the other. So far, the only thing that seems to work is picking her up and putting her in the ice cold shower. It seems to snap her out of it enough that we can at least get her to calm down. It sounds absolutely horrible but it has worked for us when nothing else has.

 

Hey, whatever works!

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I hope I don't end up sounding too confusing.

 

The psychologist said that a child should not receive therapy during the middle of a PANDAS episode. I totally agree. Like you said, the reasoning is gone. Now, the question becomes when is the PANDAS episode "over"? Well, I think each parent is the best person to know that. For my son, it was when the meltdowns stopped and the reasoning came back. For him, reasoning was stopping before hitting and being able to say things like if you don't stop, I'll take a toy away. He began to think casue and affect through.But, w/ this last time, that all hapenned, but the OCD stayed. That is what actually led me to seek a psychologist for him. As I awaited the first appt, I started weaning him off his OCD rituals, habits etc myself. He saw the therapist twice and she pretty much told me that it was obvious the remaining OCD was still different than calssic OCD. She even said, if it okay w/ me, she wouldn't even see him anymore. To just contnue doing what I had been. She said he may not even CBT (which I now see that he probably won't).

 

The thing is if I never started challenging my son, he wouldn't be where he is today. He'd still have the 15+ OCD issues he had 6 weeks ago.now, he only has one obvious ritual left and I think it'll be gone in a few days.

 

One more thing...fuelforall,

one my son had rages, SpongeBob was the only ting that made him stop. He suddenly go into a calm trance to watch it. You have no idea how may time I frantically turned that tv on.

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I am watching this post... I was going to ask a similar question.

 

What is the point of behavior modification or CBT when the underlying physical cause (brain inflammation) is still there?

 

My son's PANDAS presents mostly as behavioral problems, adhd-like stuff, emotional meltdowns, and defiance. It's like some part of his brain is missing- he never learns from his previous bad experience. It's hard to be sympathic toward this. I sometimes secretly wish it was more anxiety, fear, depression, and obvious tics so my family would agree that something is wrong. As it is they just think it's behavioral problems and I have not been strict enough. In fact I am probably too hard on him!

 

I also use TV as a calmative. Books work too, actually.

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What a great question! ANd great timing, too, as today was our psychiatrist day. I think that the therapist has no ability to help our DD. At least that was the case until 2 weeks ago when we did the IVIG. The only benefit there was to our family was a bit of an outlet for me. Our dd is only 3 so I can still talk about her in front of her.

 

I agree with the other posters that the CBT is not helpful when in an episode of PANDAS. I think these children are incapable of learning some things to a certain degree - CBT being one of them. We are 2 weeks out from our IVIG and the jury is still out on whether I think they can help us now. We are supposedly seeing the best in the area so I am trying to remain optimistic.

 

Glad to see that it isn't just us that uses TV. We used to be a non-TV household. I don't know what the heck kind of house we are now. We are just trying to survive.

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My son's PANDAS presents mostly as behavioral problems, adhd-like stuff, emotional meltdowns, and defiance. It's like some part of his brain is missing- he never learns from his previous bad experience. It's hard to be sympathic toward this. I sometimes secretly wish it was more anxiety, fear, depression, and obvious tics so my family would agree that something is wrong. As it is they just think it's behavioral problems and I have not been strict enough. In fact I am probably too hard on him!

 

I've had doctors and friends tell me the same thing, that I'm not strict enough. They just don't get it. I try to explain what dd8 does when she's in the bad zone and it's so hard to explain. I call it the "push-me-pull-you" because she'll push me away and pull me back when I try to leave. This gets me crazy inside. It's so hard to handle. When I react badly to her, I feel so bad afterwards because she can't help herself. This morning I was so proud of her. She woke up thrashing and angry when I rubbed her back to wake her up but would cry when I left the room for me to come back. I'd come back and she'd start thrashing and whining. She knew I was leaving for good the next time and she cried and said "let's just start over". So I rubbed her back and she lay there and did nothing. This was HUGE for us both. Then I pulled on her foot and cracked her big toe by accident. That got us laughing and she was fine after that. A toe crack, who knew <_<

 

Regarding TV, oh yeah, we use it whenever necessary. We used to watch huge amounts of TV. It's hard on my Mom who grew up anti-TV. DD 6 needed it just to make it through the day (she's a big spongebob watcher too!). After she went gluten free, we started watching much less and she's doing so well on her antibiotic treatment, we don't need it as much for her at all now.

 

Susan

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I am watching this post... I was going to ask a similar question.

 

What is the point of behavior modification or CBT when the underlying physical cause (brain inflammation) is still there?

 

My son's PANDAS presents mostly as behavioral problems, adhd-like stuff, emotional meltdowns, and defiance. It's like some part of his brain is missing- he never learns from his previous bad experience. It's hard to be sympathic toward this. I sometimes secretly wish it was more anxiety, fear, depression, and obvious tics so my family would agree that something is wrong. As it is they just think it's behavioral problems and I have not been strict enough. In fact I am probably too hard on him!

 

I also use TV as a calmative. Books work too, actually.

 

Hi, Bronx mom. We should bond. I'm in Brooklyn! I agree, I probably am too hard on my boy as well.

:lol:

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Yes, same frustrations. It's good to hear that I am not the only one.

 

Suzan...ditto your comments.

 

I've had doctors and friends tell me the same thing, that I'm not strict enough. They just don't get it. I try to explain what dd8 does when she's in the bad zone and it's so hard to explain. I call it the "push-me-pull-you" because she'll push me away and pull me back when I try to leave. This gets me crazy inside.

 

Today was quite a day of defiance, crabbiness, emotional meltdowns...this weekend she'd seemed better, but today wasn't. Ughh. I am so ready for that IVIG to really do something.

 

Michele..."emotional dysregulation", that's a great word for it.

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ditto. However he is losing the ineres for TV shows. We use tramp, heavy pillows and blankets, swings and music during feeling that a meltdown is coming on.

I am watching this post... I was going to ask a similar question.

 

What is the point of behavior modification or CBT when the underlying physical cause (brain inflammation) is still there?

 

My son's PANDAS presents mostly as behavioral problems, adhd-like stuff, emotional meltdowns, and defiance. It's like some part of his brain is missing- he never learns from his previous bad experience. It's hard to be sympathic toward this. I sometimes secretly wish it was more anxiety, fear, depression, and obvious tics so my family would agree that something is wrong. As it is they just think it's behavioral problems and I have not been strict enough. In fact I am probably too hard on him!

 

I also use TV as a calmative. Books work too, actually.

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I am watching this post... I was going to ask a similar question.

 

What is the point of behavior modification or CBT when the underlying physical cause (brain inflammation) is still there?

 

My son's PANDAS presents mostly as behavioral problems, adhd-like stuff, emotional meltdowns, and defiance. It's like some part of his brain is missing- he never learns from his previous bad experience. It's hard to be sympathic toward this. I sometimes secretly wish it was more anxiety, fear, depression, and obvious tics so my family would agree that something is wrong. As it is they just think it's behavioral problems and I have not been strict enough. In fact I am probably too hard on him!

 

I also use TV as a calmative. Books work too, actually.

 

Hi, Bronx mom. We should bond. I'm in Brooklyn! I agree, I probably am too hard on my boy as well.

:lol:

 

 

I sent you a message.

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