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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Stephanie2

Possible PANDAS child on Oprah today

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I've posted messages on the Oprah Show Facebook page & have already had one mom contact me for more info. Have a few others who "liked" my post. I put a message on the Oprah Show web site too. I hope that those who need the help get the help.

 

I plan to watch & DVR this show.

Edited by SarahJane

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I really do wonder how many kids with rages/odd/bipolar symptoms/mental illness are undiagnosed PANDAS.

 

Our kids with more classic OCD/tic presentations are ones that have a chance to get diagnosed/treated ...many more are out there.

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I am watching Oprah and thinking the same thing didn't know any background on the show just started listening while I was tinkering on the laptop then saw Oprah interviewing him and the first thing I thought was PANDAS.

 

Deanna

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I watched the entire Oprah show today. The child displays alot of PANDA symptoms. Would be intersted in knowing the child's medical history, all they really talked about was his rages and that the he was diagnosed with a sensory disorder and was put on mental medications that didn't really seem to help him. Soo sad, the parents are not even living in the same house b/c of the child's rages.

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Wow, I watched it this morning, seems like classic pandas to me. Both of my boys have it but only my 3yo gets violent like that with strep. The child was sitting there ticcing as he was speaking to Oprah. Please go on the website and leave a comment for this family! If enough of us mention pandas, not only will this child get help (and get out of the group home) but maybe Oprah will bring light to this illness.

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there is also a story on her site about a little girl named Jani with schizophrenia- not responding well to meds... tried to contact family about the possibility of Lyme/PANDAS. Just breaks my heart to know how many more kids may be getting institutionalized. While we are not well, we have gotten a surprising new diagnosis of Lyme, started treatment, and hoping for more progress. I know for certain if I wouldn't have gotten my dd on antibiotics as soon as she exploded last year, she would be nearly be incapacitated- she was spiraling THAT fast (1 week!!)

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Watching those clips sent chills down my spine. My DS used to threaten to kill me, and he tried to put a kitchen knife in my arm. He has not had a violent rage since we started antibiotics in the summer!

 

Did anyone else notice his red hot ear? Do other PANDAS kids have that? My DS always has hot red ears. I know this is common with bipolar disorder. Is it also common in PANDAS? Just curious...

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I emailed the producers last night also... maybe if enough of us do so, word will get back to the family to look into PANDAS. They said they do not always read "every" message, but if enough of us write....

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Watching those clips sent chills down my spine. My DS used to threaten to kill me, and he tried to put a kitchen knife in my arm. He has not had a violent rage since we started antibiotics in the summer!

 

Did anyone else notice his red hot ear? Do other PANDAS kids have that? My DS always has hot red ears. I know this is common with bipolar disorder. Is it also common in PANDAS? Just curious...

 

Yes... my son also gets red ears and red cheeks - especially during exacerbations.

 

Watching the Oprah clip it was hard to know if the child was just hot / nervous or if it was tics & a PANDAS reaction with the red ears.

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I had never seen "hot ear" discussed before. My son had "hot ear" constantly for years until treated aggressively over past six months with antibiotics. I don't know the cause. One popular physician author, Leo Galland, MD, describes the "hot ear" as being caused by food allergens. Who knows. But, now his ears are not blood red all the time.

 

 

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I emailed them as well. I cried the whole show because in my gut I think he is a PANDAS child.

His tics were out of control ... but when he spoke to Oprah he just seemed like such a sweet lost soul

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Watching those clips sent chills down my spine. My DS used to threaten to kill me, and he tried to put a kitchen knife in my arm. He has not had a violent rage since we started antibiotics in the summer!

 

Did anyone else notice his red hot ear? Do other PANDAS kids have that? My DS always has hot red ears. I know this is common with bipolar disorder. Is it also common in PANDAS? Just curious...

[intermitten red, hot pinnae or external ear] is also listed as a symptom of lyme, by Dr. Ann Corson in "What everyone needs to know about Pediatric Lyme Disease"

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I emailed them as well. I cried the whole show because in my gut I think he is a PANDAS child.

His tics were out of control ... but when he spoke to Oprah he just seemed like such a sweet lost soul

 

Amen! I have not stopped thinking about this little boy since watching the show on Friday. I wrote to the Oprah show too. I also suggested that she do a show on PANDAS! We are getting the word out....but obviously have to keep it up so that kids like this don't slip thru the cracks. :(

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Last night when talking with my mom on the phone she asked me if I'd seen this show. SHe had nopticed his eye blinking and her first thought was "could this boy have PANDAS?". I will e-mail the show as well. Just think what a dedicated Oprah show on PANDAS could do...

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