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fcefxer

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  1. Well DD21 Shelby, the director and Joe the producer have landed in Seattle! They start filming TODAY! If you would like to be a part of this, there is still time. You can message them on the Facebook fan page here: https://www.facebook.com/PANDASdoc?ref=ts&fref=ts Check there for updates and pictures. The outpouring of kindness and offers of help have been overwhelming! They are so moved by it. Please share their fan page! Thanks! Nancy SO EXCITING!!!!
  2. Thank you Elva! You can donate right here: http://www.indiegogo.com/projects/p-a-n-d-a-s-a-real-life-case-of-dr-jekyll-and-mr-hyde?c=home
  3. Hi All. My daughter Shelby is the director of the PANDAS Documentary being filmed, "PANDAS A Real Case of Dr. Jekyll and Mr. Hyde." I wanted to thank so many of you today for your support of the project and help funding it. They passed the first goal for the first location. They are going next week to Seattle, San Fransisco and LA to interview kids with PANDAS and tell their stories as well as interview leading medical people like Dr. Swedo and Dr. Trifiletti. (In San Fransisco Shelby is filming her getting Ozone shots to kill the staph infection once and for all) This has been my daughter's d
  4. Please post the link on all your Facebook walls, begging people to share and fund the project.https://www.facebook.com/PANDASdoc?ref=ts&fref=ts A producer from Hollywood just "friended" my daughter on Facebook. I'm writing and sharing the link to Oprah, Ellen, Andersen and Matt Lauer. Please do the same. We won't let them deny us anymore and a beautiful 21 year old college student has just the right amount of appeal to get us in the spotlight. And yes I am EXTREMELY proud of her. Those PANDAS deniers are gonna get kicked to the curb! This will help so many, she hopes. Also please write Dr
  5. Please post the link on all your Facebook walls, begging people to share and fund the project.https://www.facebook.com/PANDASdoc?ref=ts&fref=ts A producer from Hollywood just "friended" my daughter on Facebook. I'm writing and sharing the link to Oprah, Ellen, Andersen and Matt Lauer. Please do the same. We won't let them deny us anymore and a beautiful 21 year old college student has just the right amount of appeal to get us in the spotlight. And yes I am EXTREMELY proud of her. Those PANDAS deniers are gonna get kicked to the curb! This will help so many, she hopes. Also please write Dr
  6. http://www.sentinelandenterprise.com/ci_22719804/group-fsu-students-filming-documentary-often-misdiagnosed-disease That's my daughter the director, Shelby. Will be on TV next week! Yahooo
  7. Tenex makes my daughters tics and OCD much, much, much worse. If you had a bad reaction on a similar drug, I'm guessing it effects your child the same way. Nancy
  8. My daughter began having horrible tics with any antibiotic, after awhile we just treated with probiotics and did a netti pot 2 x a day with distilled water (which is purified), one tsp xylitol, 1/2 tsp each of baking soda and salt. If there is staph or strep in sinuses, that will kill it. Each week she improves more and more. How was she prior to the antibiotic? See if one day off, looses the tic? I know some kids are getting a new problem from antibiotics. Nancy Nancy
  9. Shelby and Joe and the crew just heard from Dr. Swedo and she is going to be in their documentary and she is helping with other aspects. So excited. I hope they let me meet her!!!! They have Dr. Trifiletti too. Hoping for Dr. Cunningham as well. SOOOOO EXCITED!
  10. They have booked travel to Seattle then LA for Casting Call. To those interested in being in the film, now is the time to decide. They will be in Seattle March 12th. Flying to San Fransisco the evening of the 14th so my daughter can get her Ozone shots in her sinuses, not sure yet if small casting call there, then on to LA for 16th, and 17th. I know some of you have spoken with Shelby (DD and the director) or Joe (the producer). They need a few more PANDAS kids. They have been working to get publicity as the primary function right now. The trailer is being finished and Shelby is being
  11. Someone is documenting this and making it a news story. If anyone knows names, please PM me.
  12. OK I need names. I live in New England and can not find someone who injects ozone in the sinuses. Please only names of people who have done this on you or a family member and it was treated successfully. Is it injected, mixed with air or water? I (as an aesthetician) have two steamers that ozone the water before it hits the face and a high frequency machine which hits the skin with ozone to kill skin surface bacteria. Is this what they are doing? Using ozone-water or ozone air in an injection? Just got off the phone with the (bleep-bleep) infectious disease doctor who does not think she needs
  13. I agree. Another family I know also had a huge problem with the sinuses that could only be seen on CT scan. Yes I will be on the phone first thing tomorrow morning. In the mean time, the recommendation I got to mix distilled water, one tsp xylitol, 1/2 tsp. salt, 1/2 tsp. baking soda, seems to be going well. Xylitol kills staph. We are crazy careful to wash the netti pot out after ever use. How did you know to look for a fungal ball and where is it? Also, as a person who has had sinus surgery and sinus surgery to fix the first sinus surgery, be sure to ask how much education they have
  14. Every one has different beliefs and experiences here and here are mine.If PANDAS/PANS is caused by bacteria causing antibodies and inflammation to attack the brain, the brain chemistry is not off to begin with and to change it further makes all blazes break loose. Every SSRI, or Zyprexa, or Adivan all made and make most of our children much worse. Often if you can find the right infection and treat that along with the inflammation, you'll get better results than psyche meds. MOST doctors want to put your child on psyche meds, rather than find out why they are having huge neuro or psyche sympto
  15. Well after 3-4 days on BEG Spray for a deep nasal cog-negative staph infection, my daughter is ticcing so strongly she had to stop it temporarily. After reading here of so many who could not get rid of this type of infection with BEG alone, I thought I would call my buddy, Dr.Bruce Suzuki, an ENT in Brookline MAss. I told him whatr occurred and he said we need a CAT scan to see if there is anything requiring drainage in her sinuses, and to see an Infectious disease doctor ASAP. He said that there is no way in ###### that the BEG spray can get in her sinuses fully becauses sinuses are all squis
  16. I have looked every where and can not find anyone who has even heard of ozone injections. I have to ask where you got them please. Also, our roof is leaking, and my husband refuses to believe we must have mold up there now. Ugh. How much will it cost to test this? Isn't there some kind of wand they can put near walls to see if mold is behind it? What makes matters worse is our living room ceiling is cathedral, tongue and groove. No idea how they'll get that apart without ruining it.
  17. Hello I guess to comment we need to know which antibiotic, how much, and what labs he had, that showed he has PANDAS. What exactly is he doing at school? If he's falling apart is it from OCD, or is he crying, If the antibiotic is correct he should be improving. I know some here do have herxes but my kids got better if the antibiotic was right and didn't if it wasn't. Did your doctor do a throat swab, ASO titer, Anti-Dnase,(those test for strep in the throat and other areas) Mycoplasma, test for viruses and as was with us, a deep nasal fold staph infection. This must be so overwhelming for
  18. My DS went gluten free and since he did, he can no longer eat carbs without them effecting his brain. He wasn't this bad while still eating gluten. He is depressed and nothing stays working for long. Eating any carbs, most times will make his brain crash. Enzymes don't seem to help. Tried both Zygest and Kirkman. No Rhyme or reason. Tried getting rid of yeast, and duflican lowered all but IGA candida Albicans. It won't budge below 2.4 with normal under 1. He has anger and I'm starting to see a motor tic. We are trying Cholestyramine on him and it is making him worse. Going to keep it up for a
  19. Can not find anyone who does ozone shots but find many with topical ozone. Will this help? also I am an aesthetician and my facial steamer has ozone. Could running this over my daughter and having her inhale ozoned steam work? Nancy
  20. We found that we started too fast the first time. just use a 1/4 scoop 3-4 times a day. Remember Cholestyramine can pull out anything given within the 4-6 hours after so medicate before, then wait 2-3 hours before giving Cholestyramine. You should notice a difference in a couple of days.If you give too much at first you will herx. Nancy
  21. Lilly, my daughter had a sinus infection too that caused severe psyche symptoms but it's antibiotic resistant staph not strep. Good Dr. Richie Shoemaker and staph. It will all make sense. To test they take a very long Q-tip and swab WAY, WAY, WAY back. Don't let them just do the edge Ugh!!! To treat they use a nasal spray that cuts biofilm and kills staph called BEG spray from Hooksett pharmacy. The only lab that tests correctly for this is Diagnostic Laboratory Medicine in Bedford MA. They handle it differently and they let it grow for a longer time. Lots of DANS that have been trained by Sho
  22. Staph! Could all those INDS be staph instead? I know Dr. B finds by looking, a lot of sinus infections. What if it's staph instead of strep and that's why it doesn't get killed. Apparently the nasal staph is antibiotic resistant. On my daughters test Which can only be done at Diagnostic Laboratory Medicine in Bedford MAss. It lists the antibiotics it is resistant too.It does not give a level except the phrase Large Amount. I guess they let it grow longer than traditional labs so they get more results. Things that make you go hmmmmmmmmm. http://www.economicexpert.com/a/Western:blot.htm Nan
  23. Yes! the Sentinel and Enterprise! I drive to Fitchburg at least once a week. They know me at the Holiday Inn (water park)by my first name! Look for the article there! Not sure what day they'll be interviewed, but very soon. Isn't the college looking beautiful with the new renovations? Their film and video dept. is very hard to get in to and really top notch. . If you can listen to the Fitchburg State radio station,91.3 WPXL, my daughter's radio show is called Shelby Sells Seashells by the Seashore. I think on Wed at 6 (but not sure since it doesn't stream to Maine!) Call in a request and t
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