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EAMom

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  1. EAMom
    The flu mist can definitely trigger a flare (PANDAS). ​Any vaccine, infection, toxin, or drug could potentially trigger or contribute to PANS. Here's an old thread on flu-mist. http://latitudes.org/forums/index.php?showtopic=21660 Other vaccines can cause flares as well, but the flu-mist is one vaccine that even the very pro-vax PANDAS docs say to avoid. (Other PANDAS docs say to avoid all vaccines once you know a kid has PANDAS.)
  2. EAMom
    PPN says 1/4 of regular starting dose or less. "BUT, the medications MUST be started at an extremely low dose (e.g., 1/4th or less of that used for a typical child) and tapered upward very slowly to avoid activation, agitation, akathisia, and other adverse effects of the drugs." https://www.pandasppn.org/ssris/ At the West Coast PANDAS conference a few years ago Swedo said: "SSRI-start with 1/10 of the regular dose" http://latitudes.org/forums/index.php?showtopic=22653
  3. EAMom
    High dose is 1.5 - 2.0 gm/kg.
  4. EAMom
    Anyway, I haven't heard of a PANDAS kid using ketamine but it sounds like you would know pretty quickly if it helped or not? ​It sounds like Early Onset Bipolar is a controversial diagnosis. I wonder how many of those kids are really PANDAS/pans? ​OMG...one of the people in the youtube video has both bipolar and narcoplepsy. Strep has been associated with narcolepsy. They think narcolepsy is autoimmune and strep can be a significant trigger.
  5. EAMom
    So is this is just an intranasal spray? I assumed this was an infusion like for depression. I know somebody that had such an infusion and it took a few hours. I can't imagine doing the infusion every 3 days (well I could, but it would be a lot of work). The bipolar boy in the NPR interview sounded very PANDAS-y. ​Does your child overheat at night easily?
  6. EAMom
    I would focus on other medical treatments...checking for other infections, T/A, IVIG, PEX, dietary changes (GF etc), anti-inflammatories. ​BTW, ketamine is mentioned here, as is riluzole and NAC: https://iocdf.org/expert-opinions/expert-opinion-glutamate/
  7. EAMom
    Here's a recent review article on Ketamine (and other anti NMDA receptor antagonists). Ketamine is showing promise as a treatment for depression. I haven't heard of it being used for PANDAS and I doubt you could get a MD to rx it? Also, if it's like treating depression, you would need multiple infusions to maintain any improvement. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4416968/ ​
  8. EAMom
    Anneio, a 3-4 week trial of antibiotics would be worthwhile even in the face of negative cultures. Augmentin (East or West) or Azithromycin (if in the West Coast) are good antibiotics to try. ​LucyC, what antibiotic was he on? Most PANDAS kids need longer than the typical 1 week course of antibiotics. ​For both kids, I would also recommend swabbing family member for strep. It's possible other infections are the problem or the strep is hiding in a difficult to swab location (sinuses etc). Also, check for perianal strep. I also wonder if anybody has looked into whether Azo offers any symptomatic relief to these kids. It can help people with interstitial cystitis (who also don't have bacteria in their bladder).
  9. EAMom
    Yes. This sounds like exactly like PANDAS. ​Your pcp can join here and they can give him/her some guidance https://www.pandasppn.org/ I would start with getting all family members swabbed for strep (throat swab). Do the 72 hour culture if the rapid is negative. Also, check the kids for perianal strep (a reddish area around the anus). Then go from there (you might not need to run blood tests if the swab is positive). ​Where are you located?
  10. EAMom
    Here's a good summary on what has been going on. Please share To buy tickets https://www.angelikafilmcenter.com/nyc/film/vaxxed-from-cover-up-to-catastrophe More info on FB https://www.facebook.com/permalink.php?story_fbid=673611479448561&id=669084493234593&substory_index=0&hc_location=ufi
  11. EAMom
    "Ticks will be tested for 6 pathogens: Borrelia burgdorferi, which causes Lyme disease;Borrelia miyamotoi, which causes tick-borne relapsing fever; Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis, Ehrlichia chafeensis, which causes human monocytic erhlichiosis, and Rickettsia rickettsii, the agent of Rocky-mountain spotted fever, and the protozoan pathogen, Babesia microti." More info here http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/
  12. EAMom
    FREE tick testing is here http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/
  13. EAMom
    Please watch, share, and support https://www.kickstarter.com/projects/1407649958/my-kid-is-not-crazy Here is their FB page: https://www.facebook.com/mykidisnotcrazy?notif_t=page_invite_accepted
  14. EAMom
    Yes, my did got the headache. It lasted a few days? Rotated Tylenol and Advil (normally we don't do Tylenol btw) and also gave bebedryl.
  15. EAMom
    Later in the book Perlmutter describes how to do the enema. Apparently he recommends "holding it in" for 30 minutes. Here's an ulcerative colitis group that is discussing the probiotic enema (2009 discussion) http://www.healingwell.com/community/default.aspx?f=38&m=1363233 and here's another discussion from a Paleo group: https://www.paleohacks.com/probiotics/probiotic-enemas-should-i-attack-my-dysbiosis-from-behind-20860
  16. EAMom
    Has anybody read the book Brain Maker by David Perlmutter? http://smile.amazon.com/Brain-Maker-Microbes-Protect-Brain%C2%96/dp/0316380105/ref=sr_1_1?ie=UTF8&qid=1443638847&sr=8-1&keywords=brain+maker In chapter 9 he talks about a PANDAS (Tourette's?) kid (Christopher)...I'm not sure Perlmutter has a great grasp on PANDAS (since in his mind, it's a form of Tourette's). However, what he had to say was interesting. He treated this kid (mainly tics, didn't mention other symptoms, so maybe he was really TS, not PANDAS/PANS, with an enema enriched with probiotics, with good results. This book does have some interesting points btw...definitely parts I don't agree with (such as he claims it's been proven that vaccines aren't a cause autism), and IMHO he blames too many problems on antibiotics (and not necessarily the infection for which the antibiotics were prescribed, or the Tylenol which was likely given with the infection/antibiotics). But, nonetheless, he brings up some interesting ideas. Also, has anybody heard of using pro-biotic enriched enemas? It's definitely an interesting idea.
  17. EAMom
    SB277 has eliminated the personal beliefs exemption for vaccines in CA. Now CA is one of only 3 states w/only medical exemptions for vaccines. There is no religious exemption. The only way to avoid mandated vaccines for those who are unable to obtain a medical exemption will be to homeschool. This is a slippery slope. We need to protect parental rights and informed consent. PANDAS/PANS kids are especially vulnerable to vaccine complications yet it is uncertain/unlikely if PANDAS kids (or their siblings) will be able to obtain medical exemptions. If you are a registered voter in CA, please sign the referendum. There are only a few more days left. Here is a list w/signing locations: http://sb277referendum.com/where-to-sign/
  18. EAMom
    If you are in CA be sure to sign the referendum. There are only a FEW more days to sign! Here's is a link with locations: http://sb277referendum.com/where-to-sign/ You must be a registered voter to sign.
  19. EAMom
    Also, please consider donating to help stop #SB277. Thanks! https://www.gofundme.com/SB277Referendum
  20. EAMom
    Here's a Natural News article about the meeting http://m.naturalnews.com/news/051182_Oakland_School_District_mandatory_vaccination_exemption_waivers.html
  21. EAMom
    This is a great informational meeting from earlier this week. Brian Hooker (Skype) plus many other powerful speakers were in attendance. https://www.youtube.com/watch?v=x4SedhV5I8E
  22. EAMom
    fencelatitiude..has your son had the Cunningham Test? that would be "evidence" to doubting docs that his problems are autoimmune in nature: http://www.moleculeralabs.com/
  23. EAMom
    thanks Kim... Here's the link to the Kirby tic article http://www.huffingtonpost.com/david-kirby/cdc-mercury-in-vaccines-d_b_66007.html for some reason your link didn't work for me (I hope this one works)
  24. EAMom
    here's one of the larger groups https://www.facebook.com/groups/PANDASParentsGroup/
  25. EAMom
    Aluminum is just as dangerous (if not more?--and the synergistic effects are also bad) as mercury. When they removed mercury from many vaccines it was replaced w/aluminum. Here's a google search w/lots of articles: https://www.google.com/webhp?sourceid=chrome-instant&rlz=1C1ASAC_enUS458US458&ion=1&espv=2&ie=UTF-8#q=aluminum%20asia%20autoimmunity ASIA is a new term: "Physicians are often puzzled by enigmatic medical conditions or the abrupt appearance of an immune-mediated disease. Such a story was recently presented to us by a young Sheikh. A Saudi Sheikh, who suffered at the age of 27 from joints pains, rash and serological evidence of anti-Ro antibodies, was diagnosed with probable systemic lupus erythematosus (SLE) at that time. He was treated with Plaquenil for a year, but as no signs of SLE were apparent, treatment was stopped and he remained disease free for the next 12 years. At the age of 39 years, 2 weeks after immunization with the flu vaccine, his disease reemerged. This time he presented with severe arthritis and pericarditis, which required treatment with high doses of steroids. This patient’s story illustrates the acceleration of an autoimmune or immune-mediated condition following exposure to external stimuli. During the past year a new syndrome was introduced and termed ASIA, ‘Autoimmune (Auto-inflammatory) Syndrome induced by Adjuvants’.1 This syndrome assembles a spectrum of immune-mediated diseases triggered by an adjuvant stimulus.2–4 The use of medical adjuvants has become common practice and substances such as aluminum adjuvant are added to most human and animal vaccine..." http://lup.sagepub.com/content/21/2/118.full Aluminum is also a known neurotoxin http://www.ncbi.nlm.nih.gov/pubmed/?term=aluminum+neurotoxicity
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