Jump to content
ACN Latitudes Forums

laurenjohnsonsmom

Members
  • Content Count

    201
  • Joined

  • Last visited

About laurenjohnsonsmom

  • Rank
    Advanced Member

Contact Methods

  • Website URL
    http://www.pandasresourcenetwork.org

Profile Information

  • Gender
    Female

Recent Profile Visitors

7,046 profile views
  1. Is this what you are looking for? http://db.tt/1zdVpiAt
  2. Levofloxacin for the treatment of Mycoplasma pneumoniae-associated meningoencephalitis in childhood Susanna Esposito, Claudia Tagliabue, Samantha Bosis, Nicola Principi Department of Maternal and Pediatric Sciences, Università degli Studi di Milano, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Via Commenda 9, 20122 Milan, Italy Received 13 December 2010; accepted 12 January 2011. published online 07 March 2011. Abstract Full Text PDF References Abstract It has long been postulated that Mycoplasma pneumoniae plays a causative role in the development of neurological sy
  3. We tested Lauren's Cam levels through Madeleine C's lab when she was in full exacerbation (sneezing tic 25,000x day) and she was mid-high pandas range. We tested again soon after Lauren's 1st Ivig that successfully stopped the sneezing tic and her Cam level dropped significantly. Wondering if anyone else did this test before and after ivig, esp after significant Improvment in symptoms and got the same results? MC always told me that the cam level correlates with the severity of the exacerbation.
  4. Did your son/daughter develop a SUDDEN onset of movement disorder in the last 6 months? Was there.. a) first exacerbation or a subsequent exacerbation but with more extreme movement than the previous exacerbations. If this describes your situation we need to hear from you! This can be with or without anxiety/OCD symptoms but must include movement. We are working with some folks who are particularly interested in this subgroup but have a time-sensitive deadline. Please send me a PM or send us an email at info@pandasresourcenetwork.org with a brief summary of your story/
  5. If a sneeze can be a tic and can be resolved thought diagnosing and treating the infection(s), even after Sanjay Gupta and others called it a conversion disorder (we showed then where they can ''stick it") why couldn't a hiccup? Coincedently my other daughter had a HUGE manifestation of symptoms last spring after contracting EBV (Epstein Barr). She was already diagnosed with PANDAS previously with a milder onset that was mostly resolved with abx but after the EBV she had wild OCD, Anxiety, irrational fears, both presentations of Anorexia Nervousa, contamination fears, etc. She was never th
  6. Since when and "who" ruled out PANDAS in re: to the Leroy case. According to this article they have! http://abcnews.go.com/m/story?id=15456672&sid=26
  7. Mono...as in Epstein Barr Virus. The virus my beautiful DD 12 surcumbed to last spring that caused such a devastating surge of pans symptoms. Extreme contamination fears, hiccup tic, OCD, anxiety, irrational weather fears, rages and lets not forget the anorexia nervosa (both presentations). She almost died after refusing to eat for. >20 days. EBV is ugly! The worst possible scenario with a subseptible PANS child. It moves in and stays put. No wonder these girls have issues.
  8. Hi Kim, I noticed how your link was to a "Inside Edition" piece. I know the editor there, VERY well. As much as they come across as more of a "national enquirer" type. They are very sympathetic to these families and situations and truly want to help. Time will only tell where this ends. Hopefully with these families finding the right docs,right diagnosis and healing such as we did. So frustrating... (((
  9. Gupta works at the DENT institute with these other two docs. That are treating the Leroy girls no wonder he's sidding with them on the conversion theory. Grr...
  10. Wondering with all the "HIIPA" cover-up why Sanjay gets to tell the whole world that he's confident Guardisil wasn't a factor because all the girls did not get vaccinated with it! Hmm...did somebody say something "he" shouldn't have???
  11. My comment to Anderson Cooper/Sanjay Gupta.... "First the clueless psychiatrist on the Today show (where did you find her?) now AndersonCooper, tonight! Really Anderson? After Sanjay Gupta tells the world, two years ago, that my daughters overnight sneezing tic 25,000 a day is "psychosomatic" only to look like a fool when my daughter finds healing (and proper diagnosis) AFTER high dose antibiotics and IVIG you have him back on your show to do the same damage to these poor sick girls in Leroy, NY. SHAME ON YOU! There are infectious triggers causing these kids to be sick. we have had over 4,
  12. It just stirs up lots of emotions (good and bad). These parents will get "shelled" with an overload of information, be stalked, criticized and more. Like they aren't already traumatized enough. Been there, done that, still doing "that". I guarantee you there is MUCH more than any media clip will portray. I also want to add a comment about the psychiatrist and her remarks about the "conversion disorder" and how the media works. These people have sometimes just a few hours (or minutes) to pull all the element s of a story together. Just like when Nancy Snyderman dropped the "munchausen bomb" on
  13. I had been watching the other topic regarding this story but refrained from commenting as we have been working with the Today Show and others who are desperately trying to help these families. I can tell you that they are aware that this can be infectious triggered and that they are getting the correct contact information regarding the wonderful, brilliant doctors out there that have helped so many of our families and these doctors are more than willing to help. Out of respect for there privacy and our own personal, similar experience I hope people will help these families and provide support
×
×
  • Create New...