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Everything posted by minimaxwell

  1. We are looking to create a document to share at the upcoming NE PANS/PANDAS conference AND with doctors, researchers and the Massachusetts Department of Health to raise awareness of the fact that an incredible number of children are affected with PANS/PANDAS in certain towns on the South Shore of Massachusetts. It seems like a high incidence rate and we want to figure out why and try to get more medical help for our area. We are looking for participants in these South Shore towns for now: Cohasset, Duxbury, Hanover, Hingham, Hull, Kingston, Marshfield, Norwell, Pembroke, and Scituate. If you have more than one child we need you to re-take the survey for each child. It is the only way we can accurately graph the results. AND we do not know everyone in these towns who have children with PANS/PANDAS and are counting on you to share this survey with people you know. The more information we can gather the better. This is very important. Please take this survey EVEN if your child has recovered. Here is a link to the survey: http://survey.constantcontact.com/survey/a07e806sw77hkcjmjt2/start Thank you in advance for your time and participation. The NE PANS/PANDAS Parents Association
  2. We want to invite your pediatrician to the NE PANDAS/PANS conference and need your help. If you would like us to send an invitation to your pediatrician or health care provider let us know ASAP! There isn't a lot of time left and tickets are going quick. But it's not to late. The more health care providers we can reach and educate the better for all of us. Our idea is to have you reach out and make the invitation. Just give your health care providers a call and tell them about the conference and you hope they will consider attending. In addition, if you email us your provider's name, mailing address and email address if you have it we will send a formal invitation as well. Together we just might convince them the importance of attending. Email Megan Greenstein at megangreenstein@aol.com all the details, she is spearheading this effort.
  3. There is going to be a PANS/PANDAS conference in Providence RI November 9 and 10 featuring top specialist from across the country. This 2 day conference is being hosted by the NE PANS/PANDAS Parent Association which I am a part of. To learn more about the conference and to register, please visit our website at www.nepandasparents.com There is only room for 400 attendees and we have already sold more than 200 seats. So if you are interested in attending I urge you to register. You do not want to miss this incredible opportunity.
  4. We have an appt to see a mito specialist at Mgh, this was dr Hellers suggestion . I barely understand this. Still trying to find all the piecescofvthis puzzle. Awaiting results from dr freedman, pancreas specialist at BI with special interest in fatty acids.
  5. It did uncover something that has to do with fatty acids that may be linked to her pancreatitis . It was supposed to be covered, but ended up with a 17k bill from courts ten. I called them and they are working on it. I am not worried at all. So, I think if you can get it covered go for it.
  6. Yes it is free!! Come join me to spread Pandas awareness. Last time I went there were over 10 families that had never heard of Pandas. All their kids were suffering with OCD. I just heard back from one of them that their dd now has a pandas dx and is getting treatment.
  7. Finally getting around to doing this (I know, I know ,been on the back burner for too long) I will see Dr Geller tomorrow and ask if he will order this test. Where do I get the light=tight container? Do I just drop in the vit c I buy OTC? Also DD has high copper which I have been treating with Zinc. Will ask to test zinc,copper,B6, B12,glutithione and homosytine tomorrow? Anything else I should add? we are also dealing with reoccuring yeast infections. We treat for a few days with diflucan but it comes back in a few weeks. We do probiotics but it still comes back. Which is a better option long term nystatin or diflucan? Have you done the candida test through this lab?
  8. How do you know if glutamate is an issue? What do you test for? I have heard Dr Jenike speak recently and he said he likes to use Namenda,
  9. I think we had resulys within 3 weeks.
  10. Just curious, who wrote the Clinda for MycoP?
  11. I believe NorcalMom use Doryx. Just curious who suggested it for you?
  12. Starly girl- who is your PANDAS DOC? Dr T has sugessted Valtex to us as well. I did not see any improvement though.
  13. So well said! Some of you are so very articulate. I would love for you to post these comments on my FB page under the article as well as on HLN,Globe,OCD Foundation and BCH fb pages. I know that this is a lot to ask but if you find yourself with a free moment... Also, I will be speaking with the IOCDF soon regarding the awareness campaign that is in the works. I would love to share with them what you are doing Emily. TIA ( my email is Tiffmaxwell@aol.com I am Tiffani Maxwell on FB)
  14. I just posted it on the Boston Children's Hospital FB page. Please go there and comment. This is our chance to let our voices be heard.
  15. So sorry, sounds like PANDAS/PANS to me. I have full confidence Dr Trifiletti will figure it out. Please keep us updated.
  16. I would love a copy too, thanks in advance, tiffmaxwell@aol.com
  17. Posting for a friend who is having trouble with her latitudes account: Does anyone have kids that need ivig every three months? If so, has a doctor been able to find an exact reason as to why? My response:My daughter has had 2 so far. She was great for about 8 weeks then started backsliding. She also got sick around that time. First time not sure,second time MycoP. Strep neg both times. Going for #3 on Thursday. We have been spacing out to 4 months. Starting to wonder if she needs them more frequently.. Immunologist cannot find a specific reason.
  18. We are in the same boat with United. We have lVlG scheduled for Thursday/Friday. DD also has active MycoP. She has been on Clinda as well. ID docs here said wrong abx for MycoP. All docs agree we should go ahead with lVlG , it will only help her fight the infection.
  19. 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
  20. There is a group working on media coverage and we are trying to so spread the word about the protest.They could use more help though so if you can help let Lynn Johnson know.
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