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fcefxer

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Posts posted by fcefxer

  3. Severe vocal tic

    in Tourette Syndrome and Tics

    Posted

    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!

  5. Extremely Excited and Proud

    in PANS / PANDAS (Lyme included)

    Posted · Edited by fcefxer

    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

  9. documentary in my city

    in PANS / PANDAS (Lyme included)

    Posted

    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.

  10. For those of you in Maine

    in PANS / PANDAS (Lyme included)

    Posted

    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.

  11. Massachusetts PANDAS Moms

    in PANS / PANDAS (Lyme included)

    Posted

     

    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

     

  13. Filming "PANDAS A Real Case of Dr. Jekyll and mr. Hyde" in Los

    in PANS / PANDAS (Lyme included)

    Posted

    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

  15. Dr. Krigsman

    in Autism Spectrum Disorders

    Posted

    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...?

  20. PANDAS Documentary Next Friday and Saturday in Boston!

    in PANS / PANDAS (Lyme included)

    Posted

    Too bad I am not closer. With my kiddos expressive delay, much of what she says is just like an out of the mouths of babes experience. You can tell it is not scripted or prompted and she is very sincere.

     

    For example, we were discussing her desire to have babies the other day. I told her many criteria before she could have babies, only a few of which were she needs to be older, more mature and she needed to find a man that was responsible enough to help her raise these babies. She looked at me a few minutes, and dead panned asked me if I would help her find a man :o:D:lol: .

     

    That is adorable! She sounds like she'd be perfect for the film. Contact us if you reconsider!

     

    Nancy

  21. PANDAS Documentary Next Friday and Saturday in Boston!

    in PANS / PANDAS (Lyme included)

    Posted

    PANDAS, A Real Case of Dr. Jekyll and Mr. Hyde will be filming in the Boston area on Friday and Saturday. If you would allow your children to be part of the film, they'd love to have them. Please contact them at contact@pandasdocumentary.com or call 207-649-6163 to sign up. Your child will need to be able to be interviewed and tell their story a bit. This will cover surrounding areas as well such as New Hampshire, Maine, Rhode Island...

     

    I've really enjoyed watching this process. Many of the kids have never met another person with PANDAS. To have Shelby interview them gently, and fully understand what they have gone through has been pretty amazing to watch. I see the wonderful connection she makes with each child. I'm so proud of her. The interview process is very quiet and non threatening. Someone runs the camera and Shelby talks with them, asking questions about how they feel and identifying with them. It's very low key. I have really enjoyed meeting so many of you fellow warriors in this battle. I'm learning so much too. Please let them know ASAP if you are interested and remember they are mostly interviewing just the kids.

     

    Much, much thanks,

    Nancy

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