

fcefxer
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Posts posted by fcefxer
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Looking for one that treats adults as well for my 25 year old PANDA
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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!
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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.
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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 -
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?
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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
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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.
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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.
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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
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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!
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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
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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
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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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There will be no additional interviews sunday at the walk-a-thon. any more interviews must be on saturday near Pittsburgh airport. Please contact them at contact@pandasdocumentary.com ASAP.if interested.
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"PANDAS, A Real Live Case of Dr. Jekyll and Mr. Hyde," if filming in Pittsburg this weekend. We have openings Saturday all day and will be at the walk-a-thaon on Sunday for limited mini interviews. If you would like to be a part of this film, please contact us ASAP at contact@pandasdocumentary.com Looking forward to meeting many of you.
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Please visit our fan page if you are interested in participating https://www.facebook.com/PANDASdoc?fref=ts email here contact@pandasdocumentary or call 207-649-6163. Thank you and best wishes, We are interviewing Dr. Susan Swedo Monday morning!!!!
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We need to get insurance for my daughter and want to choose one that covers IVIG, and the genetic testing that Dr. T is not offering that tells so much more. Also any ideas about a group she could join for lower rates? No idea how we'll pay for it.
Nancy
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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
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That is adorable! She sounds like she'd be perfect for the film. Contact us if you reconsider!
Nancy
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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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OK folks, these kids flew across the country, they are working so hard, and we have families cancelling! I understand PANDAS things come up, but to fly across the country again for these interviews will cost a fortune. Please! If you are in the Seattle area, help them out and be a part of this documentary. Today is it.
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I'm in metro Detroit. We have a group here and ther are also quite a few in Ohio. I'm interested. Let me see what the interest might be here in MI.
I believe Ohio is on the list
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I already started following them on FB. I thought in their documentary video it was mentioned they may come to the Austin area? We're in the Austin area.
Yes! They are planning to! If you know other families affected with PANDAS there, that would like to participate. please let them know.
Nancy
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Are they planning to be in the Midwest?
Where exactly? I know if they can get a big group, they will most likely go.
True Calm/ Day 7 of Delsym to Lower Glutamate
in PANS / PANDAS (Lyme included)
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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.