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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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