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A much more offical translation went up on Free EW--this one by someone who is bilingual and who did not have to go through a web translator!

 

"The following note is from the senators of the PDL party:

 

The news about E. W. (whose full name can be found on the internet), is making headlines; a 16 year old girl was hospitalized in a hospital in Boston and removed from her family because the parents wanted to have her treated for Pandas and Lyme disease, illnesses that she actually suffers from, but the authorities have imposed, instead, an incredible and unnecessary hospitalization in the psychiatry ward, the senators Antonio Gentile, Giovanbattista Caligiuri, Vincenzo Apothecaries, Giuseppe Valentino and Francesco Bevilacqua of the PDL attest.

 

Previously to her hospitalization, the girl was treated with antibiotics and her condition had improved markedly and quickly, but when she was forced to stop antibiotics to take psychotropic substances instead, the situation suddenly and quickly deteriorated.

We appeal to the U.S. ambassador in Rome for action to support the W.family -further attest the senators who believe that a great country like the United States, full of freedom and of science, can not and should not tolerate certain things.

 

This story shows how these disorders are still unrecognized despite clinical evidence and the results achieved with steroids, antibiotics and immunoglobulins (IVIG infusions) and the numerous and constant research studies that confirm the intuition of those who, precisely in the U.S., first identified and discover these pathologies."

 

Ko's Mom

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A much more offical translation went up on Free EW--this one by someone who is bilingual and who did not have to go through a web translator!

 

"The following note is from the senators of the PDL party:

 

The news about E. W. (whose full name can be found on the internet), is making headlines; a 16 year old girl was hospitalized in a hospital in Boston and removed from her family because the parents wanted to have her treated for Pandas and Lyme disease, illnesses that she actually suffers from, but the authorities have imposed, instead, an incredible and unnecessary hospitalization in the psychiatry ward, the senators Antonio Gentile, Giovanbattista Caligiuri, Vincenzo Apothecaries, Giuseppe Valentino and Francesco Bevilacqua of the PDL attest.

 

Previously to her hospitalization, the girl was treated with antibiotics and her condition had improved markedly and quickly, but when she was forced to stop antibiotics to take psychotropic substances instead, the situation suddenly and quickly deteriorated.

We appeal to the U.S. ambassador in Rome for action to support the W.family -further attest the senators who believe that a great country like the United States, full of freedom and of science, can not and should not tolerate certain things.

 

This story shows how these disorders are still unrecognized despite clinical evidence and the results achieved with steroids, antibiotics and immunoglobulins (IVIG infusions) and the numerous and constant research studies that confirm the intuition of those who, precisely in the U.S., first identified and discover these pathologies."

 

Ko's Mom

 

Thanks for sharing.

Wonderful to see the support and the acknowledgement.

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Reposting Bulldog24's post here:

 

Hi everyone.Hopefully you have heard by now that there is a protest being held for the next 3 days at BCH!!!! There is a child in the hospital that has PANDAS/PANS/LYME and custody has been taken away from her parents for no good reason. We are protesting for her and ALL PANDAS/PANS/Lyme kids that have been mistreated and not treated and we hope this will start to change things in this area! please like this page https://www.facebook...eeelizabethwray and read more. We think this is a day of change and could help all of our kids! I personally brought my son here and was told "absolutely not PANDAS" and "stay off the internet" and he was diagnosed at the NIH 3 months later. So this could have been us just as easily as this family. Please share tweet contact everyone you know about whats going on here. Today is the day to push this out there. All are welcome to attend the protest and details are on the page I gave. Thanks so much!

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my latest post on BCH fb page:@ - I actually do know the whole story as I was in court with the family and the BCH counsel. Let me tell you first hand this is a big mistake BCH is making. Please transfer Elizabeth down the block where Dr Geller has told me he is willing to help her. OR BCH please invite Dr Geller to consult. He is a world known PANDAS specialist and seeing that you do not have one on staff not sure why this is an issue???<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11.111111640930176px; line-height: 15.555556297302246px; "><br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11.111111640930176px; line-height: 15.555556297302246px; ">Please do not stop posting as media is now looking on :)

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How did the protest go?

 

If anybody is on FB...one thing PANDAS families are doing is posting pictures/stories of their PANDAS kids on BCH's page...so feel free to add to it. http://www.facebook.com/BostonChildrensHospital?ref=ts&fref=ts

 

TO see what I am talking about, go to "recent posts by others" (right hand side) and click "see all".

Edited by EAMom
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EA Mom,

Whoever has the idea of taking a page from BCH's book and posting PANDAS kids success stories in a style similar to the write-ups the site feature of their kid success stories (along with pictures of super-cute Pandas kids) was brilliant. These posts are extremely effective--I'm going to go in and like every one of them!

Ko's Mom

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EA Mom,

Whoever has the idea of taking a page from BCH's book and posting PANDAS kids success stories in a style similar to the write-ups the site feature of their kid success stories (along with pictures of super-cute Pandas kids) was brilliant. These posts are extremely effective--I'm going to go in and like every one of them!

Ko's Mom

 

hopefully some of the ACN members (and guests) reading this will post pictures on BCH's page as well! :)

Edited by EAMom
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I was at the protest for a short while with my three kids, between AM kindergarten and preschool and when I had to work in the screening. I connected with a few moms from here, from my support group, from the parents of kids with PANDAS FB page, and some moms that I just met. I was also introduced to Elizabeth Wray's grandfather and Lynn Johnson.

It was peaceful and people did stop and listened and took some flyers. I hope we helped at least one family, and I hope BCH will soon be on a path towards accepting PANDAS. My fingers are crossed!!!

My diagnosed children, DD5 and DS3, held signs. There was a mom here who was also in a similar situation with her daughter a few months back. She held up a sign saying how abx worked for her and her friends had a sign that said abx saved her best friend. There is also a video of her saying her results from abx treatment.

I put my daughers story on the BCH page. She has the big smile with no front tether in he polka dot dress!! We had personal experience with that hospital and I was not pleased.

Please, post your kids pictures and their stories!!

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How did the protest go?

 

If anybody is on FB...one thing PANDAS families are doing is posting pictures/stories of their PANDAS kids on BCH's page...so feel free to add to it. http://www.facebook.com/BostonChildrensHospital?ref=ts&fref=ts

 

TO see what I am talking about, go to "recent posts by others" (right hand side) and click "see all".

delete

Edited by philamom
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I was at the protest for a short while with my three kids, between AM kindergarten and preschool and when I had to work in the screening. I connected with a few moms from here, from my support group, from the parents of kids with PANDAS FB page, and some moms that I just met. I was also introduced to Elizabeth Wray's grandfather and Lynn Johnson.

It was peaceful and people did stop and listened and took some flyers. I hope we helped at least one family, and I hope BCH will soon be on a path towards accepting PANDAS. My fingers are crossed!!!

My diagnosed children, DD5 and DS3, held signs. There was a mom here who was also in a similar situation with her daughter a few months back. She held up a sign saying how abx worked for her and her friends had a sign that said abx saved her best friend. There is also a video of her saying her results from abx treatment.

I put my daughers story on the BCH page. She has the big smile with no front tether in he polka dot dress!! We had personal experience with that hospital and I was not pleased.

Please, post your kids pictures and their stories!!

She is beautiful, What a great smile!!

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I also sent an email to Boston Children's Hospital. I told them PANDAS is very real and explained our results with continuous Rx. I also asked them to educate themselves on the subject as this is not something made up by hundreds of individuals. Hope it helps! Prayers for Elizabeth!!

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