Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy

      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010

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
  1. Time to Make Some Noise

    Info@pandasresourcenetwork.org
  2. spreading awareness

    Is this what you are looking for? http://db.tt/1zdVpiAt
  3. levofloxacin

    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 syndromes and this has recently been confirmed by highly sensitive and specific molecular diagnostic techniques for identifying infection due to this pathogen. Encephalitis and meningoencephalitis are the most frequent M. pneumoniae-associated neurological manifestations. Macrolides are considered the antibiotics of choice for treatment of paediatric M. pneumoniae infection, but the increase in macrolide minimal inhibitory concentrations of a substantial percentage of M. pneumoniae strains and the poor penetration of macrolides into cerebrospinal fluid suggest that drugs other than macrolides should be evaluated. Here we describe five paediatric cases of M. pneumoniae-associated meningoencephalitis in which 14 days of intravenous (i.v.) administration of levofloxacin (25mg/kg/day in two divided doses) led to the disappearance of neurological signs and symptoms, wi! th a good safety profile. Although further studies are needed to demonstrate whether or not M. pneumoniae-associated meningoencephalitis should always be treated with antimicrobials, what the drug of choice is, how long therapy should be administered and whether supportive therapy is useful, these findings suggest that i.v. levofloxacin should be considered for the treatment of paediatric M. pneumoniae-associated meningoencephalitis. I have copied this abstract for us in my ongoing quest to figure out chronic high mycop IGG numbers for my dd over the course of more than 2 years. Biaxin and minocycline did not show sustainable gains after multiple high-dose courses over said time.
  4. IVIG and CamKinase II

    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.
  5. BUMP... Thank you to everyone who has participated thus far!
  6. 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/history as soon as possible. Thanks for helping us help other families! -Lynn
  7. Can a hiccup be a tic?

    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 the "tic-er" b-u-t did develop a "hiccup sounding tic" that waxed and wayned for months. So yes, we had a sneezer and a hiccuper!
  8. New headline!

    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
  9. Dr T on Dr Drew tonight

    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.
  10. Dr. Drew Show--Le Roy Girls

    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... (((
  11. 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...
  12. 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???
  13. 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 4,000 families reach out to our organization www.pandasresourcenetwork.org in the last two years who's children have found healing and it WASN'T through psychiatric treatment and psycho-tropic medication. WAKE UP!!! Please tell the WHOLE STORY!!! " I would LOVE to pull in Sanjays salary to pull BS straight out of my....
  14. LEROY girls on the TODAY show this morning!

    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 us the first time we were on the Today Show. Nancy had ZERO information about our situation before 2.6 million viewers watched our story, for the first time. There's a BIG race to "get to the story first" even of all the details haven't been worked out yet. Let's just all be grateful that the folks at the Today show will continue help them. Let's fill this topic full of supportive comments. I can tell you how absolutely devastated I was when I found this forum, just a few days after we hit mainstream media. There were just as many "not so nice" comments and critiques about my family as there was support. After we were on the Today show on Veterans Day we were stuck in Manhattan because there where storms in our hometown that shut down all the airports on that end. We spent 3 days getting our arms and legs pull off my different people who all wanted a piece of the story. We just wanted to find help for our daughter. When we finally landed into the airport in darkness as power was still out for miles. I sat in the darkness in my bed around midnight, mental and physically exhausted that night and fired up my laptop (we had cable/internet but no power) and I received an email that directed me to this forum. I sat there and sobbed over some of the absolutely terrible things that I read about my family. Opinions, predictions...It was devastating! Oh, and let's not forget that the last thing we saw when we were boarding the plane that day was Sanjay Gupta and my daughters face plastered on EVER TV monitor in the entire airport! I sat there with my jaw dropped as he explained that my daughter's condition was psychosomatic! THANKS FOR NOTHING DR. GUPTA! At least Nancy Snyderman went back on the Today Show the day after our first appearance and retracted her previous comments and simple said "we don't know" and this could be infectious driven/triggered. You will NEVER see Sanjay Gupta do that!!!!
  15. 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 and be careful not to criticize what you see portrayed in the media. Let's all pray that these children and their families will find answers and most importantly, if they do decide to post on this forum, that we provide support as they struggle through this journey. Lynn
×