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michele

Conversion reaction and PANDAS

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Lately several leading Dr's and several PANDAS parents are reporting their Dr's and psychiatrists and neurologists are seeing a correlation between PANDAS after strep and a reaction in the body called Conversion Disorder where the mind plays games on them and they are not able to walk or they may loose muscle control or stop eating or can't stop bark. it causes the brain to take over and make your body have compulsions and can even make you think you are blind and can't walk..and so on..it's real to the person but there is nothing really wrong with their body..it is a mental thing. It goes along with PANDAS..and a lot of Parents do not know this..and more and more children are having it..do some research on it..help spread the word on this because these kids that we think have just tics and OCD and compulsions are having this too..and it can be helped and finding the key to helping them is getting to know what is going on with them and letting them know this is ok and real and they can help control this.. Kids are not able to walk because of this and PT can help a lot with it..they loose so much muscle control..Please check it out..might help you are someone else you know.See More If anyone has access to this article I think it would be very helpful to see the connection of PANDAS and Conversion.

 

What is Conversion Disorder and How Can You Cope? - Associated Content from Yahoo! - associatedcontent

 

www.associatedcontent.com

 

Conversion disorder unfortunately affects children all over the world. It is defined as a type of conditions that has altered or complete loss of physical function.

 

Prospective identification and treatment of children with pediatric autoimmune ...... PANDAS and paroxysms: a case of conversion disorder? J Child Adolesc Psychopharmacol. 2008 Feb;18(1):109-15. Kuluva J, Hirsch S, Coffey B.

 

NYU Child Study Center, New York, NY 10016, USA. coffeb01@med.nyu.edu

 

PMID: 18294094 [PubMed - indexed for MEDLINE]

 

 

http://www.ncbi.nlm.nih.gov/pubmed/18294094?dopt=Abstract

 

http://www.medhelp.org/posts/Child-Behavior/Conversion-disorder/show/463076 Conversion and PANDAS in medhelp

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I think it would be really hard to differentiate between regular P.A.N.D.A.S. symptoms & Conversion Disorder symptoms, especially if other issues like Lyme are present. Not discrediting it, because it's a really interesting theory! I wonder if anyone on here has dealt with symptoms as severe as some of the typical Conversion ones. I haven't heard of anyone becoming paralyzed (Conversion or otherwise) or anything of the sort, but with the brain involvement & other pyschiatric/mental problems I don't see why P.A.N.D.A.S. & Conversion couldn't be linked!

 

Just wanted to add this. I spent a lot of time Conversion Disorder this past semester with my Psychology teacher, mostly just because it's one of the ones thrown out by ignorant Lyme docs. Like hypochondriasis, Fibromyalgia, & CFIDS. Conversion Disorder is when the mind reacts inappropriately to mental stress. Imagine if someone close to you passed away & instead of making you feel sad or cry or whatever your mind is SUPPOSED to be doing in that situation, it reacted by making you unable to use your legs. It's just like all of your wires are switched & sending the completely wrong signals.

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My daughter had the "paralysis" which could last from a few minutes up to three hours, and included drooling and slurring. She also had "dystonia" for a couple of months. We know the immobility and dystonia were conversion- when the neuro told her the dystonia was CD, she walked the same day. After the Dr. told her the immobility was CD, she didn't experience it anymore. Now I wonder if the tics are also CD. I found some articles on conversion disorder, and am emailing one of our Drs to see about having some of the recommended tests done to exclude other diagnoses. The list of tests are on this page:

My link

 

I found another article about conversion disorder- Barking Vocalizations and Shaking Movements in a 13-Year Old Gir

Edited by jackieann

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Oh my -- Thank you Michele for posting this--frightening.

 

It just goes to show you that children have been SUFFERING in heart breaking ways w/ little to no recognition by the majority of the medical community for way too long.

 

During our d's worst episode (after 3 weeks in a downward spiral of OCD) left her balled-up, holding her arms behind her in a painful position. Crouched kneeling on the floor and seemingly unable to walk on her own. We were told (by more then one psych) that she was in a severe OCD storm (eyes shut, holding spit in her mouth, and did not speak for over 3 weeks--she was 9 years old.) Entirely non-functional. Talented and gifted -- normal child before this. (Tested negative for strep at the time.)

 

We were lifting and carrying her to all appointments, bathroom breaks, etc.

Was this CD? Was this being imprisoned by "Pitands" ??? We will never know, BUT what we do know is that Antibiotics and a Steroid Burst brought her back. It was a 9 month trip back to full 100%.

 

You all know the story, as we are all living the story in our private lives on this forum. Our family is now in the midst of exacerbations in both of our d.s -- One (with steroids/abx continuing) is now "down" to intrusive thoughts and muttering.

 

But our younger daughter-- is literally tearing our home and lives apart with raging anger, directive imprisoning OCD (and yes, she at times has apparent eye/head switching tics.) ALL started again this summer after a day of play with a family who had 2 kids w/strep at the time (unknown to us of course.) What is breaking my heart is that insurance is denying immune modulating treatments -- which appear to be our only hope now for our younger d.

 

This is a horrible life-stealing reality for us, but I am thankful we know more now then we did two years ago and I will be eternally grateful for the compassionate doctors who have provided help.

Edited by T.Mom

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when I 1st took my dd to the Dr for what was going on with her(I had never heard of PANDAS) her doctor told me what was going on with her was OCD, anxeity with a conversion disorder. What her biggest symptom was was like a sensory issue where her clothing were hurting her, everything that touched her was hurting her and putting her in pain. A few weeks after I took her in and that is what the doctor told me, All heck broke loose with her.. She sat naked on my bed arms curled around her knees rocking back and forth crying her eyes out in pain. She couldn't sleep because when she laid down on the bed even just the sheets touching her would hurt her. two or three days into all heck breaking lose she tested Pos for strep throat..

And that is when the doctor told me he had good news and bad news.. Good news was he no longer thought this was a conversion disorder but that he thought what she had was PANDAS..

That was the 1st time I had ever heard of PANDAS.

 

He started the antibiotic treatment and all those sensory or conversion or whatever it was issues went away.

it took longer with the OCD(mostly the obessive thinking) and anxeity to go away.. she was alot better..

 

But dang it all.. She is in a big flare at the moment.. but the stuff hurting her has never came back.

 

Lately several leading Dr's and several PANDAS parents are reporting their Dr's and psychiatrists and neurologists are seeing a correlation between PANDAS after strep and a reaction in the body called Conversion Disorder where the mind plays games on them and they are not able to walk or they may loose muscle control or stop eating or can't stop bark. it causes the brain to take over and make your body have compulsions and can even make you think you are blind and can't walk..and so on..it's real to the person but there is nothing really wrong with their body..it is a mental thing. It goes along with PANDAS..and a lot of Parents do not know this..and more and more children are having it..do some research on it..help spread the word on this because these kids that we think have just tics and OCD and compulsions are having this too..and it can be helped and finding the key to helping them is getting to know what is going on with them and letting them know this is ok and real and they can help control this.. Kids are not able to walk because of this and PT can help a lot with it..they loose so much muscle control..Please check it out..might help you are someone else you know.See More If anyone has access to this article I think it would be very helpful to see the connection of PANDAS and Conversion.

 

What is Conversion Disorder and How Can You Cope? - Associated Content from Yahoo! - associatedcontent

 

www.associatedcontent.com

 

Conversion disorder unfortunately affects children all over the world. It is defined as a type of conditions that has altered or complete loss of physical function.

 

Prospective identification and treatment of children with pediatric autoimmune ...... PANDAS and paroxysms: a case of conversion disorder? J Child Adolesc Psychopharmacol. 2008 Feb;18(1):109-15. Kuluva J, Hirsch S, Coffey B.

 

NYU Child Study Center, New York, NY 10016, USA. coffeb01@med.nyu.edu

 

PMID: 18294094 [PubMed - indexed for MEDLINE]

 

 

http://www.ncbi.nlm.nih.gov/pubmed/18294094?dopt=Abstract

 

http://www.medhelp.org/posts/Child-Behavior/Conversion-disorder/show/463076 Conversion and PANDAS in medhelp

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NO.

 

Conversion disorder and post-infectious neuro-psychiatric auto-immune disease are not the same, even if sometimes they might look the same fleetingly and superficially. Conversion disorder emanates from psychology. Post-infectious neuro-psychiatric auto-immune disease emanates from neuro-immunology. And if "something's wrong with your brain," then "something's wrong with your body," since the brain is part of the body -- arguably the most important part of all.

 

My son is mute. It is clearly not "conversion," not "hysteria," not "selective." The neurologist has observed and explained to us that the periaqueductal gray, a tiny little area in the brain which, among other things, mediates vocalization, has been, and is still, under the attack of autoimmune disease. This is a phenomenon Thomas Sydenham observed in the 1600's (though he understood even less than we do today just what was causing the phenomenon). It's not that there's anything wrong with my son's throat or tongue or teeth or lips, it's that the necessary signaling, from deep inside his brain, simply isn't working.

 

Similarly, my son has suffered tetraparesis, also called "chorea mollis." No, he wasn't technically "paralyzed," the way someone who breaks his back can be paralyzed, but at times he was completely unable to move his limbs or to speak a word, and it was terrifying. Finding working reflexes in a patient who cannot move may demonstrate that his spinal cord is intact, may demonstrate that he does not have Guillain-Barre, but it does not rule out something else going wrong in the basal ganglia, periaqueductal gray, or other parts of the brain.

 

"When all you have is a hammer, everything looks like a nail" (or like a knee, as the case may be!). Doctors are regularly approaching these illnesses as they would a badly-written multiple choice test, blindly and slavishly choosing between "a" and "b" when the real answer is neither one, it's "x"! We must not allow "conversion disorder" to be the label for all odd physical symptoms that can't immediately be diagnosed by means of easy things such as testing patients' reflexes. This is dumb and dangerous. The brain is far more complex, and the diagnostic possiblities far more various.

 

Tenacity

Edited by Tenacity

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Conversion disorder and post-infectious neuro-psychiatric auto-immune disease are not the same, even if sometimes they might look the same fleetingly and superficially. Conversion disorder emanates from psychology. Post-infectious neuro-psychiatric auto-immune disease emanates from neuro-immunology. And if "something's wrong with your brain," then "something's wrong with your body," since the brain is part of the body -- arguably the most important part of all.

 

Have to agree. When our ds 1st got sick (and was originally diagnosed with SC), he had episodes when he could not use his arms or legs, could not walk, could not even raise his head. He would sometimes collapse to the ground with no warning, unable to control his muscles or move. It was bizarre, episodic, and terrifying. Spent a lot of time on an SC board back then, and many people there described the same phenomenon. The veterans on there called it "the rag-doll effect." And it struck our son at times when there was no visible stress (emotional stress anyway).

 

Since the basal ganglia help regulate motor control, it seems logical that these episodes are related to the same inflammation that causes other SC or PANDAS symptoms... to a layperson, at least.

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We had this problem with drs wanting to diagnose my daughter with CD and they tried several times to put her in an institution for that. I refused!! They told her that she had that and it didnt improve her symptoms at all. She still couldnt walk, she couldnt sit up, etc. I literally had two psychiatrists tell me that when physicians cant figure it out, they blame it on that. I believe that. Texas is a perfect example of a place where they believe in none of this and will do whatever it takes to make people think they are crazy...I am the crazy one having to deal with all this, not her!

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NO.

 

Conversion disorder and post-infectious neuro-psychiatric auto-immune disease are not the same, even if sometimes they might look the same fleetingly and superficially. Conversion disorder emanates from psychology. Post-infectious neuro-psychiatric auto-immune disease emanates from neuro-immunology. And if "something's wrong with your brain," then "something's wrong with your body," since the brain is part of the body -- arguably the most important part of all.

 

My son is mute. It is clearly not "conversion," not "hysteria," not "selective." The neurologist has observed and explained to us that the periaqueductal gray, a tiny little area in the brain which, among other things, mediates vocalization, has been, and is still, under the attack of autoimmune disease. This is a phenomenon Thomas Sydenham observed in the 1600's (though he understood even less than we do today just what was causing the phenomenon). It's not that there's anything wrong with my son's throat or tongue or teeth or lips, it's that the necessary signaling, from deep inside his brain, simply isn't working.

 

Similarly, my son has suffered tetraparesis, also called "chorea mollis." No, he wasn't technically "paralyzed," the way someone who breaks his back can be paralyzed, but at times he was completely unable to move his limbs or to speak a word, and it was terrifying. Finding working reflexes in a patient who cannot move may demonstrate that his spinal cord is intact, may demonstrate that he does not have Guillain-Barre, but it does not rule out something else going wrong in the basal ganglia, periaqueductal gray, or other parts of the brain.

 

"When all you have is a hammer, everything looks like a nail" (or like a knee, as the case may be!). Doctors are regularly approaching these illnesses as they would a badly-written multiple choice test, blindly and slavishly choosing between "a" and "b" when the real answer is neither one, it's "x"! We must not allow "conversion disorder" to be the label for all odd physical symptoms that can't immediately be diagnosed by means of easy things such as testing patients' reflexes. This is dumb and dangerous. The brain is far more complex, and the diagnostic possiblities far more various.

 

Tenacity

 

 

Extremely well stated Tenacity--

Edited by T.Mom

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