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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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Just posted on BCH fb page:

 

 

Your BCH statement on PANS/PANDAS should say "we incorrectly treat PANS/PANDAS!" I am the mother of 3 PANDAS sons. Over night dramatic change in the first child rocked our world but the true nightmare began when we tried to find treatment! If he would have been treated immeadiatly with antibiotics and not psyc meds, then he would not have gone on to get Sydenham"s chorea. Due to the wasted time by doctors that suggested psyc hospitals and psyc meds, he went incorrectly treated for way too long! When we finally recieved the correct PANS diagnosis and antibiotics, that is when he finally began to improve. Because we knew what was hppening with the other 2 sons, they were put on antibiotics immeadiatly and recovered very quickly. Early CORRECT TREATMENT is KEY. Due to the wasted time by doctors which were more eager to give a 9 year old boy dangerous phyc drugs before looking for an infection, three years later we still are dealing with lasting issues from late treatment! I will say that the PANDAS specialists saved his life, our son has been mentally returned to us...please release Elizabeth into the care of her parents and those PANDAS doctors which are eagerly waiting to help her. Every day you are keeping her from correct treatment is a day that you could be causing more damage. This could have been us! Thank God it was not as this illness is devastating enough as it is. We are all watching, please right your wrong!

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If anybody wants to join in, the question was posted (by a certain PANDAS parent/advocate):

 

"I’m hearing from a concerning number of parents who are being accused of “doctor shopping” because of their search through multiple providers, trying to find someone who can finally treat their child’s PANDAS/PANS. Isn’t that lovely: getting accused of doing something wrong for refusing to give up or listen to the uneducated who say you're wrong. For Sammy, I had ten or eleven doctors involved before two Daniel Geller, MD and Cathy Nicolaides, MD - treating simultaneously - knew what to do and got it right (with the support of Conner Moore, MD my pediatrician who came on board after I fired the first one). How many doctors has it taken you?"

 

someone has suggested writing (on BCH's FB wall) PANDAS stories of how many docs they had to go through for proper diagnosis/treatment...so go at it!

Edited by EAMom
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Just posted on BCH fb page:

 

 

Your BCH statement on PANS/PANDAS should say "we incorrectly treat PANS/PANDAS!" I am the mother of 3 PANDAS sons. Over night dramatic change in the first child rocked our world but the true nightmare began when we tried to find treatment! If he would have been treated immeadiatly with antibiotics and not psyc meds, then he would not have gone on to get Sydenham"s chorea. Due to the wasted time by doctors that suggested psyc hospitals and psyc meds, he went incorrectly treated for way too long! When we finally recieved the correct PANS diagnosis and antibiotics, that is when he finally began to improve. Because we knew what was hppening with the other 2 sons, they were put on antibiotics immeadiatly and recovered very quickly. Early CORRECT TREATMENT is KEY. Due to the wasted time by doctors which were more eager to give a 9 year old boy dangerous phyc drugs before looking for an infection, three years later we still are dealing with lasting issues from late treatment! I will say that the PANDAS specialists saved his life, our son has been mentally returned to us...please release Elizabeth into the care of her parents and those PANDAS doctors which are eagerly waiting to help her. Every day you are keeping her from correct treatment is a day that you could be causing more damage. This could have been us! Thank God it was not as this illness is devastating enough as it is. We are all watching, please right your wrong!

 

FYI 3boysmom...BCH may delete your post if you use names (not sure if just Elizabeth is enough for deletion)...so check and make sure your post is still there in a few days

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