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just wondering if beth or anyone has told all our good doc's know about this, dr's T,B,K, etc.? they are all so busy to begin with, and i dont know if they can do anything, but it seems that this might need more that parents, and psychiatrists to advocate.

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Just FYI, my DH received a return email from Dr. Jenike. He is involved, and says he has been from basically the beginning! To quote him:

 

I have been trying to help from the beginning. Things are progressing and the media is getting involved. What a mess.

You go, Dr. J!! :wub:

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Dr. Jenike is wonderful. Everytime I email him, he responds usually within the hour. Talk about a dedicated doctor!! There needs to be more passionate doctors, such as him, our PANDAS specialists, and others who will go above and beyond to help these suffering children.

I hope he can get some help for Elizabeth. I cannot imagine the pain in their family right now. Children's Boston should be ashamed of themselves.

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From the email Beth sent, the infectious triggers are lyme and mycoplasma, not strep. I'd hate for the BCH retort to be "there's no strep, so all this push back is noise based on incorrect information." The media will not do a good job of splitting hairs if this becomes an issue over symantics and BCH is able to use a loophole. Let's do ourselves a favor as a community and use the term PANS in any communications instead of PANDAS.

 

(EAMom - thanks)

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Good thought. How about PANDAS/PANS? I think PANDAS may be more well known. Also, it would be interesting to know if Elizabeth's current condition was set up by a prior strep infection--since Beth used the term PANDAS I suspected that was the case.

 

I'm not sure I'd assume that without getting some sort of insider info. Not sure about Beth's views on lyme. I agree with you that at the very least, we should use both PANDAS/PANS.

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This story is just heartbreaking. I cannot stop thinking about this poor girl and her family. Just curious (and certainly not asking to breach any confidentiality if that's an issue), does anyone know how old this child is? I don't think I've seen her age written anywhere.

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Just noticed Harvard Medical School has a Facebook page--doctors at BCH are part of their faculty (as is Dr. J). Perhaps HMS should be getting postings as well about their faculty. I still have no idea how to post on FB.

 

If I could I might say something like:"Your faculty at Boston Children's are practicing willful ignorance with regard to PANDAS/PANS and have wrongfully removed a young sufferer of this devasting disease, Elizabeth Wray, from the custody of her parents. It is time for all of your faculty to follow the lead of your own Dr. MJ and practice evidence-based medicine for this disorder."

 

Marcel has done up a great poster that he put on the FB BCH page.

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I've just sent an email to the Govenor of Mass, and also posted on BCH Facebook site. http://www.mass.gov/governor/constituentservices/contact/

Please read a PANDAS story from BCH's own blog!!!!!http://childrenshospitalblog.org/one-mothers-story-how-strep-throat-attacked-my-childs-brain/

 

No matter the different views we must really be thankful for our courageous treating MD's

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Just FYI, my DH received a return email from Dr. Jenike. He is involved, and says he has been from basically the beginning! To quote him:

 

I have been trying to help from the beginning. Things are progressing and the media is getting involved. What a mess.

You go, Dr. J!! :wub:

 

Yay!!!!! :D

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Good thought. How about PANDAS/PANS? I think PANDAS may be more well known. Also, it would be interesting to know if Elizabeth's current condition was set up by a prior strep infection--since Beth used the term PANDAS I suspected that was the case.

 

I'm not sure I'd assume that without getting some sort of insider info. Not sure about Beth's views on lyme. I agree with you that at the very least, we should use both PANDAS/PANS.

 

I believe Beth understands the Lyme connection. She had Sammy tested way back when, and I think she advises parents to get their PANDAS kids tested. She had a friend who's autistic child was recovered after Lyme treatment (it was in her book).

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If BCH said anything at all about "no PANDAS b/c no strep-- only Lyme and MycoP" I suspect the Wrays could go after them for a HIPAA violation. And, as expected, they have already issued the CYA statement saying they can't comment b/c of fed regs (true, actually) but, of course they provide care for all children, even those with PANDAS... posted to the BCH FB page about 45 mins ago.

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This hits so close to home for me...literally and figuratively. I'm in the Boston area and this terrifies me, though hardly surprises me. My daughter suddenly presented with PANDAS in early April and was officially diagnosed in July. Several months prior to that my husband became extremely ill with Lyme, Mycoplasma, Bartonella, Anaplasmosis, and very likely Babesia. I have friends who brought their daughter with severe neuro Lyme to BCH and were told that there was no such thing as neuro Lyme, the condition was psychiatric, and their daughter was just trying to get attention. This was about 10 years ago!

 

Elizabeth Wray's story terrifies me, angers me, and saddens me. I will do whatever I can to help this family.I am willing to be interviewed. I will write letters and spread the word. I will contact the media. I'm willing to demonstrate at BCH. I would love to get together with any other local families.

 

Another complication in this situation is that there are some doctors at MGH, including an infectious disease doctor who is considered a PANDAS expert there, do not believe in chronic/complicated Lyme Disease.

 

The ILADS conference is going to be held in early Nov here in Boston. They are doing 2 sessions on PANDAS/PANS. I wonder if there is some way ILADS could help out in this situation.

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Hey guys, I know it's been a while since I posted but I wanted to let you know that we are in the process of organizing a rally/protest outside of the Boston Children's Hospital in support of the Wray's and to spread awareness for PANDAS/PANS.

 

This will be an organized rally with professional signage that Lynn (PRN -- and Laurensmom on this forum, I think) is having printed and we will have printed literature and educational materials to offer anyone that will take it from us!

 

The TENTATIVE date is next Thursday from 8am-3pm --HOWEVER, this depends on if we get the permit on time. We may have some media coverage as well. It's looking very likely that we will. If any of you are in New England and would be interested in coming down - PLEASE DO.

 

Let's be heard AND seen for our children!!

 

Hope everyone is well!

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