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EAMom

Dent interview

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Dr Minion said these aren't "real tics" (ie are CD) b/c the girls movements are "arrhythmic and the cross midline". Can someone explain this?

 

They also claim that b/c movements get worse with stress, it must be CD. But, I found this on Chorea http://www.dartmouth.edu/~dons/part_1/chapter_10.html

 

do some of the girls have Chorea? if chorea can be made worse by anxiety, why do they think other tics can't be as well?

 

There are several other, less common abnormal movements. Chorea is a rapid, fleeting, random and non-stereotyped movement which is worsened by anxiety and which can be suppressed for short periods by conscious effort. They differ from tics since tics are stereotyped and repeat within the same muscle groups. Tics may affect the voice, as well, and consist of repeated throat clearing, sniffing or coughing. Multiple vocal and motor tics are seen in Tourette syndrome. Athetosis is a slow, writhing, snakelike movement of a body part or parts. Dystonia is a sustained twisting of the body, usually the trunk or neck (where it is called torticollis). Hemiballism is a flinging motion of one side of the body, potentially resulting in falls.

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I have been wondering if any of our "tic" expert moms could chime in....

 

We don't have tics, so I know NOTHING about them :( Dr McVige certainly said these were not "tourettic- type" tics, but she didn't really seem to have a list of facts (neither did Mechtler) about why- which I would think a competent doc would be able to rattle off.

 

So, what do we collectively know about tics- in light of what we are seeing in these stories....

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Dr Minion said these aren't "real tics" (ie are CD) b/c the girls movements are "arrhythmic and the cross midline". Can someone explain this?

 

They also claim that b/c movements get worse with stress, it must be CD. But, I found this on Chorea http://www.dartmouth.edu/~dons/part_1/chapter_10.html

 

do some of the girls have Chorea? if chorea can be made worse by anxiety, why do they think other tics can't be as well?

 

There are several other, less common abnormal movements. Chorea is a rapid, fleeting, random and non-stereotyped movement which is worsened by anxiety and which can be suppressed for short periods by conscious effort. They differ from tics since tics are stereotyped and repeat within the same muscle groups. Tics may affect the voice, as well, and consist of repeated throat clearing, sniffing or coughing. Multiple vocal and motor tics are seen in Tourette syndrome. Athetosis is a slow, writhing, snakelike movement of a body part or parts. Dystonia is a sustained twisting of the body, usually the trunk or neck (where it is called torticollis). Hemiballism is a flinging motion of one side of the body, potentially resulting in falls.

 

 

Good find EAMom. --this text definition of Chorea captures the PANS-tic experience perfectly: "Chorea is a rapid, fleeting, random and non-stereotyped movement which is worsened by anxiety"

 

Both of our daughters have had chorea 'tics' during severe episodes.

 

We see these 'tics' morph from one kind to another, usually stay somewhat the same for a week or so, such as the finger flicking, eye-stretching, head jerking to the side, head bobbing, etc.

 

I asked our neurologist how could we tell what WAS a "tic" and we were told that a tic was essentially the sensation that a movement needed to be done, and that there was a relief felt when it was carried through. We have seen these alongside of the PANS OCD issues -- Interesting to note that chorea can be consciously controlled for short periods of time.

 

We can confirm, with video, that these same movements go away with the right antibiotics/steroids/IVIG/and for one child pex. Oh, and their teachers can too-- :) --over the past four years!

Oh, and the episodes, triggered by exposure to strep or other illness, even in others.

 

I believe the statement Dr M made refers to his belief that the movements of the Leroy girls could not be "tics" proper, as they were not consistently the same and they crossed the vertical mid-line of the body--my limited interpretation.

Edited by T.Mom

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Dr Minion said these aren't "real tics" (ie are CD) b/c the girls movements are "arrhythmic and the cross midline". Can someone explain this?

 

They also claim that b/c movements get worse with stress, it must be CD. But, I found this on Chorea http://www.dartmouth.edu/~dons/part_1/chapter_10.html

 

do some of the girls have Chorea? if chorea can be made worse by anxiety, why do they think other tics can't be as well?

 

There are several other, less common abnormal movements. Chorea is a rapid, fleeting, random and non-stereotyped movement which is worsened by anxiety and which can be suppressed for short periods by conscious effort. They differ from tics since tics are stereotyped and repeat within the same muscle groups. Tics may affect the voice, as well, and consist of repeated throat clearing, sniffing or coughing. Multiple vocal and motor tics are seen in Tourette syndrome. Athetosis is a slow, writhing, snakelike movement of a body part or parts. Dystonia is a sustained twisting of the body, usually the trunk or neck (where it is called torticollis). Hemiballism is a flinging motion of one side of the body, potentially resulting in falls.

 

 

The girl I saw on tv (with the really bad ones) looked like chorea to me...specifically SC. They sure looked like random, flinging motions and came from the distal muscles (i.e. the muscles groups closer to the trunk of the body, rather than from the hands. Tics would have been repetative movements of the same muscle group.

 

Some of the other girls may have tics.

 

Basically, what it comes down to is that DENT neurologists refuse to accept PANS as a viable diagnosis, so they saw no reason to ease the suffering of these girls by bothering to actually TEST for strep and other infections, and now that someone has done that (aka Dr. T.), they are trying to make him into a country bumpkin, (who actually does evidence based practice, incidentally,) and claim that when they get better, it will just be a placebo effect anyway! (see the news report by Dr. Mark Schwartz from Fox on another post.)

 

It's truly sickening and unbelievable. Unfortunately, most people have no idea what to believe, and will believe the news reporters as the word of G-d!

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Dr Minion said these aren't "real tics" (ie are CD) b/c the girls movements are "arrhythmic and the cross midline". Can someone explain this?

 

They also claim that b/c movements get worse with stress, it must be CD. But, I found this on Chorea http://www.dartmouth.edu/~dons/part_1/chapter_10.html

 

do some of the girls have Chorea? if chorea can be made worse by anxiety, why do they think other tics can't be as well?

 

There are several other, less common abnormal movements. Chorea is a rapid, fleeting, random and non-stereotyped movement which is worsened by anxiety and which can be suppressed for short periods by conscious effort. They differ from tics since tics are stereotyped and repeat within the same muscle groups. Tics may affect the voice, as well, and consist of repeated throat clearing, sniffing or coughing. Multiple vocal and motor tics are seen in Tourette syndrome. Athetosis is a slow, writhing, snakelike movement of a body part or parts. Dystonia is a sustained twisting of the body, usually the trunk or neck (where it is called torticollis). Hemiballism is a flinging motion of one side of the body, potentially resulting in falls.

 

 

Good find EAMom. --as that captures the PANS tic experience perfectly: "Chorea is a rapid, fleeting, random and non-stereotyped movement which is worsened by anxiety"

 

Both of our daughters have had tics during severe episodes.

 

We see tics morph from one kind to another, usually stay somewhat the same for a week or so, such as the finger flicking, eye-stretching, head jerking to the side, head bobbing, etc.

 

I asked our neurologist how could we tell what WAS a "tic" and we were told that a tic was essentially the sensation that a movement needed to be done, and that there was a relief felt when it was carried through. We have seen these alongside of the PANS OCD issues --

 

We can confirm, with video, that these same movements go away with the right antibiotics/steroids/IVIG/and for one child pex. Oh, and their teachers can too-- :) --over the past four years!

Oh, and the episodes, triggered by exposure to strep or other illness, even in others.

 

I believe the statement Dr M made refers to his belief that the movements of the Leroy girls could not be "tics" proper, as they were not consistently the same and they crossed the vertical mid-line of the body--my limited interpretation.

 

Okay, so Chorea does cross midline? And it is arrhythmic, right? so these girls could have Chorea.

 

I know when my dd had movements in 2008, different docs had different opinions on what they were ... Complex tic, compulsions, or chorea ... We showed them all the same video and got different answers. They did cross midline. Nobody ever said anything about them being CD b/c they crossed midline. I guess I need to look at videos of chorea vs tics.

 

I wonder how many cases of SC dent has ever diagnosed.

Edited by EAMom

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Dr Minion said these aren't "real tics" (ie are CD) b/c the girls movements are "arrhythmic and the cross midline". Can someone explain this?

 

I seriously wonder where these people are coming from.

 

Cheri used to warn everyone who was thinking of sending their child to a TS camp that they could start a new tic or potentially have a worsening from being around all of the other children with tics. When my son was at his worst, I remember him shaking his head because he saw a horse on TV do it. I mean really these people don't know that about tics? Siegel either?

 

Also, I find it almost ironic. When I watch those girls, their tics seem so similar, and to me, it seems that one side is affected more than the other. Different sides, but the arm flinging and the little side ways shaking of the head?

My experience with tics is that they are diverse. Shoulder shrugs, wrist shaking, back and forth head shakes, I don't know....they seem to be affected so similarly. Does anyone else feel that way? I noticed the uncle from Indiana talked about that with his nephew too (looking like one side affected more than the other).

 

I'm going to post his detailed summary of the events for his nephew in case someone else would like to read it.

 

I know you guys will pick right up on the illness that the dad had (ear infections) and "Sams" illness and mono, the mention of the dogs being sick etc. Something that I had to wonder, is how can a child be SO ill and NOTHING show up on imaging, and all of the other tests? Is someone practicing with a new bio weapon (i am kidding there)? This just seems unreal. Sam was in band so field exposure too.

 

Thera was in Flags

Lori from Corinth was a pitcher

I'm really wondering if anyone has looked into what these fields are treated with anything in common?

 

2012-0203-Sam Case Detail-with Alias names rev 3.pdf (will have to cut and paste can't make it clickable)

 

Also, I noticed this posted on the flu tracker forum

 

First Leroy Teen Who Reported Symptoms Speaks

By WKBW News

By Kendra Eaglin

February 9, 2012

[snip]

Nicholson talked about the day when her body first started to change. It was last May while she was pitching in a softball game. She felt sick, passed out and began having a seizure...

 

and it made think of something else..Colorado, Oct 6, softball field??? What is going on here?

bolding mine

http://www.timescall.com/news/longmont-local-news/ci_19881252

 

Longmont 11-year-old maintains positive attitude despite paralyzing disorder

 

 

During softball practice after school on Oct. 6, Riley started feeling a twinge in her right shoulder blade that quickly turned into a shooting pain in her back. It was so severe she could barely walk to the car when her mother's boyfriend picked her up.

 

Karen left class at Regis University, where she's working on a nursing degree, and rushed home to Longmont. At first Karen, a nursing intern on the medical and surgical floor of University of Colorado Hospital in Aurora, thought the pain was a pinched nerve, but when it didn't subside, she took Riley to Longmont United Hospital's emergency room. Riley later was taken by ambulance to The Children's Hospital in Aurora, and an MRI revealed transverse myelitis.

 

"I just couldn't believe that when I left for school and Riley walking and on her way to softball practice," Karen said, "and by the time I got back, she was completely paralyzed."

 

Karen said Riley's doctors suspect the transverse myelitis was an adverse reaction to a flu shot and a booster for the Tdap -- tetanus, diphtheria and pertussis -- vaccine that Riley received a few weeks after taking antibiotics both for a bacterial stomach infection and for strep throat.

Edited by kim

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Dr Minion said these aren't "real tics" (ie are CD) b/c the girls movements are "arrhythmic and the cross midline". Can someone explain this?

 

They also claim that b/c movements get worse with stress, it must be CD. But, I found this on Chorea http://www.dartmouth.edu/~dons/part_1/chapter_10.html

 

do some of the girls have Chorea? if chorea can be made worse by anxiety, why do they think other tics can't be as well?

 

There are several other, less common abnormal movements. Chorea is a rapid, fleeting, random and non-stereotyped movement which is worsened by anxiety and which can be suppressed for short periods by conscious effort. They differ from tics since tics are stereotyped and repeat within the same muscle groups. Tics may affect the voice, as well, and consist of repeated throat clearing, sniffing or coughing. Multiple vocal and motor tics are seen in Tourette syndrome. Athetosis is a slow, writhing, snakelike movement of a body part or parts. Dystonia is a sustained twisting of the body, usually the trunk or neck (where it is called torticollis). Hemiballism is a flinging motion of one side of the body, potentially resulting in falls.

 

 

Dr. Minion may have a good imagination to just makes things up left and right, my goodness. Well established that anxiety/stress can make tics worse. Look, anxiety/stress makes EVERYTHING worse. It's something a lot of TS docs would tell you, that this can be how it takes longer for people to get diagnosed with TS, is some stressful event happens, then tics appear, and now everyone assumes that it is just an emotional response to the event and once the person gets over the event they'll be fine, aka, it's all in their head, aka, conversion disorder. Eventually people may start to question or realize, no there was a real problem before the event, just that the event made it worse.

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I think it is scary that two "top" neurologists, who diagnose movement disorders, would make the statement that these are not real tics b/c they are arrythmic. Tics are arrythmic. Are they getting the terms "repetetive" confused with "rythmic"?? Complex tics are arrythmic and do cross the midline of the body. Same with chorea. I don't get why they are saying a tic needs to be rythmic to be real.

 

Colleen

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Maybe they're not saying it for those who are aware of what it implies... could be they're just tossing out jargon hoping it'll fly over the heads of the general viewing audience and seem too sophisticated or confusing for the lay person to understand. Essentially using the (appearance of) "specialized knowledge" to make the audience feel inferior-- thereby establishing themselves as the brilliant experts whose dx shouldn't be questioned.

 

This would be pretty consistent with the posturing seen from them in their media appearances: calling Dr T's abilities and motives into question, the constant name dropping (e.g.; Swedo, as well as the institutional: Harvard), pointing out (repetitively) that all of these highly-trained, top experts agree with them, trying to make it seem they are in a different league of docs (academic, reputable, etc.), the fact that they even keep appearing. If they, and the families, are confident in the dx and treatments-- why not just hole up and DO it and let the rest of the public speculation, etc. play out on its own? If media attention is bad for these patients, why keep talking about them on TV? Why make suggestions about their "denial" and secret connections, traumas, family issues, etc. so the public can speculate even more about their private lives and things that didn't have to be brought into the spotlight? This is true for their patients, as well as the girls who are not their patients. Doctors going to the media and accusing ill, ADOLESCENT girls who are not their patients of "malingering" and bullying, and commenting that they've had traumatic experiences, bringing up their appointment scheduling history with Dent, that their fathers who speak to the media are "estranged," etc. is just unacceptable behavior (to heck with "first do no harm" right-- these are the patients who either wouldn't see them or questioned their dx, so they're going to take them down). Sorry-- this spins off of this particular interview to the quotes from the M&Ms in articles in the Post and Mail, etc.

 

This thing still just boils me whenever I think about it! Even if the CD dx is (real &) appropriate, these docs' behavior is just unprofessional. And contemptible, really.

Edited by thenmama

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Maybe they're not saying it for those who are aware of what it implies... could be they're just tossing out jargon hoping it'll fly over the heads of the general viewing audience and seem too sophisticated or confusing for the lay person to understand. Essentially using the (appearance of) "specialized knowledge" to make the audience feel inferior-- thereby establishing themselves as the brilliant experts whose dx shouldn't be questioned.

 

This would be pretty consistent with the posturing seen from them in their media appearances: calling Dr T's abilities and motives into question, the constant name dropping (e.g.; Swedo, as well as the institutional: Harvard), pointing out (repetitively) that all of these highly-trained, top experts agree with them, trying to make it seem they are in a different league of docs (academic, reputable, etc.), the fact that they even keep appearing. If they, and the families, are confident in the dx and treatments-- why not just hole up and DO it and let the rest of the public speculation, etc. play out on its own? If media attention is bad for these patients, why keep talking about them on TV? Why make suggestions about their "denial" and secret connections, traumas, family issues, etc. so the public can speculate even more about their private lives and things that didn't have to be brought into the spotlight? This is true for their patients, as well as the girls who are not their patients. Doctors going to the media and accusing ill, ADOLESCENT girls who are not their patients of "malingering" and bullying, and commenting that they've had traumatic experiences, bringing up their appointment scheduling history with Dent, that their fathers who speak to the media are "estranged," etc. is just unacceptable behavior (to heck with "first do no harm" right-- these are the patients who either wouldn't see them or questioned their dx, so they're going to take them down). Sorry-- this spins off of this particular interview to the quotes from the M&Ms in articles in the Post and Mail, etc.

 

This thing still just boils me whenever I think about it! Even if the CD dx is (real &) appropriate, these doc's behavior is just unprofessional. And contemptible, really.

 

I could not have said it better!

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