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fcefxer

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  1. Hello! I'm that Nancy. Yes Delsym helped my son greatly except after awhile it make him have a hard time urinating. Namenda controls high glutamate as well. Might want to try that. I can be found on the PANDAS Parents Group and Parents of Kids who have PANDAS on Facebook as Nancy Tozier. Sorry I never saw your message requests.
  2. Looking for one that treats adults as well for my 25 year old PANDA
  3. fcefxer

    Severe vocal tic

    Azithromycin always made my kids worse even if it was the correct antibiotic for the infection. Ask for a different family of antibiotics that also kill strep and try that. I can't tell you how many times we could not tolerate the correct antibiotic, but when you find the one that they do tolerate, the get better quickly!
  4. Get checked by BLOOD test for strep, pneumachocal pneumonia, Lyme and Mycoplasma pneumonia. If nothing then get checked for EBV, cocksackie, thyroid antibodies. Somethging is throwing out antibodies at your brain.
  5. My 24 year old daughter, as a film major, flew around the country making a documentary about PANDAS, interviewing PANDAS kids and following up three years later. She did this while having a PANDAS flare. You have no idea how difficult this was. She interviewed the researchers, physicians, scientists and families. Here is the promo! Are you ready? SO EXCITED!!!!! PANDAS: A Real Life Case of Dr. Jekyll and Mr. Hyde is a new online docuseries. Here is the first video, an introduction to the series. For the past few years we interviewed dozens of children across America, and followed their stories growing through adolescents with PANDAS, and the struggles doctors and family members have trying to find a treatment for this life changing disorder. Each episode will feature a new child, family or PANDAS specialist. It was important to us that this docuseries be made free and available to the public. Every episode will be featured on this Youtube channel. Once the series is complete, it will be compiled into one documentary and sent out on DVD to those who have ordered it. I'm honored to be able to share the brave and unique stories of the wonderful children I have met. https://www.youtube.com/watch?v=qCfNKELDCWY&feature=youtu. Please share!!!!!!!!!!!!!!! and like at https://www.facebook.com/PANDASdoc/?fref=ts
  6. I can't stress enough that I need a PANS doctor ONLY in Los Angeles. No other area will work as my DD23 can not drive far. PLEASE, I am only looking for recommendations in LA/ North Hollywood area. We found a Dr. Rachel West who claims she treats PANS/ PANDAS. Has anyone had any experiences with her?
  7. Does anyone know which anesthesia will not make my DD worse? She needs sinus surgery, getting really bad, but don't want to make things so much worse? Anyone? Nancy
  8. The Film is Called "PANDAS A Real Life Case of Dr. Jekyll and Mr. Hyde." The film producer had PANDAS, yet traveled around the country interviewing kids and young adults with PANDAS as well as Dr's Swedo, Cunningham, Trifiletti and many others. They are not really a support group, but are film makers from Fitchburg State University, a very competitive film school. Their fan page is here: https://www.facebook.com/PANDASdoc . Not really a support page yet Shelby often talks with some of the struggling little kids to help them feel it will be OK and kids do grow up and are able to lead productive lives.
  9. fcefxer

    For those of you in Maine

    We are from Maine and have seen both Dr. Price and Dr. Wu. Dr. Price no longer treats PANS and Dr. Wu, although he will treat, I don't think he treats agressively enough. Best to call Dr. T. in Ramsey NJ and do a phone consult, then follow up with Dr. Wu. Dr. Wu tends to think more yeast but did not look for infections and there were quite a few.
  10. IT'S ALMOST HERE!!!!!!! Monday Aug 5th is the PANDAS Fundraiser at Destare Nightclub in Fitchburg, MA! We are hoping for a BIG turnout to raise funding for completion of the documentary, "PANDAS A Real Life case of Dr. Jekyll and Mr. Hyde." Shelby has been working 40 hours a week just to pay the bills on this film, with generous contributions from Mom and Dad as well. Please join us for a night of drinks, snacks and merriment to help support this great cause and get our message out. We are hoping for local newspaper coverage. Please, if in Massachusetts, please print and stick up this poster. If you can't jet to Massachusetts to join us, please help by a small donation. It can be any amount, even $2. Here is the newest donation link. http://www.indiegogo.com/projects/p-a-n-d-a-s-a-real-life-case-of-dr-jekyll-and-mr-hyde--3/x/3693769?show_todos=true
  11. The filming is now occuring Saturday at the Sheraton universal, 333 Universal Hollywood Dr., Universal City, CA. There are openings at 11AM and 2PM. Please consider taking a ride over and being a part of this movie. Call 207-649-6163 if interested or email at contact@pandasdocumentary.com . Thank you!
  12. Saturday we continue to film the documentary at the Sheraton Universal, 333 Universal Hollywood, Universal City. There are spots open. Please! This is a long way to travel and we have had some cancelations.Please consider having your child tell their story so we can raise awareness for this disease! Send an email to contact@pandasdocumentary.com or call 207-649-6163 right now to sign up. If you can help in any way, please let us know and you can also donate securely at http://www.indiegogo.com/projects/p-a-n-d-a-s-a-real-life-case-of-dr-jekyll-and-mr-hyde--2?c=home Also if you know of an organizations that should be filmed in that area please let us know. Thanks, Nancy
  13. They are trying to get enough to film in the LA area next week (Wed afternoon and evening) If you can confirm and are interested please contact ASAP to contact@pandasdocumentary.com
  14. fcefxer

    Dr. Krigsman

    My son is not Autistic but has had PANDAS and when in a flare appears to be Autistic. His stomach has been a problem since day one, with horrible reflux, low stomach acid, treated yeast........ He ate gluten, carbs, and sugars with no problem as a small child but after PANDAS hit hard and I believe a virus of some sort too, after going off gluten, most carbs and sugar, my son finds now that he has a lot of anger, HORRIBLE brain fog, and if he eats those offending substances, it all gets 20 times worse. Did the yeast free diet for agfes with Duflican, he can't have yeast anymore. No antibiotics in ages and tons of probiotics. I just think it's something else and we need to step it up a notch. He does have a weakened immune system and had a pos. ANA panel. Trying to get our next step. I don't have insurance so this will be out of pocket. How badly will it hurt for a mom who lost her business to PANDAS...?
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