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laurenjohnsonsmom

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Everything posted by laurenjohnsonsmom

  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 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.
  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/history as soon as possible. Thanks for helping us help other families! -Lynn
  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 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!
  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 4,000 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....
  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 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!!!!
  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 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
  14. Nancy, I'm so happy to hear your finding something that works for your family. All of our children seen to be affected a little differently and what works for one doesn't exactly work for another. You have always been a mother to turn over EVERY stone and when you ran out of stones you went back and turned them over again! We have also questioned parasites from the very beginning and continue to explore! Thank you for staring my day on such a positive note. It is encouraging in so many ways! I hope you continue to find healing.
  15. One more note... The only item in my post that was any type of quote was the portion that Dr. N personally explained the purpose to me including.. "(1) scientific exchange in aid of understanding the mechanism(s) of the disease and (2) physician education and awareness to improve diagnosis and treatment." I'm guessing that she would use that same explanation to anybody that inquired about the conference. Again, collectively, perhaps the already existing advocacy groups, along with the PANDAS community should consider what it would take to have sometime in the future a unique forum for parent advocates, parent awareness, and parent support-- and for something like that we could truly open it to the public. Lynn
  16. Vickie, my post had nothing to do with any correspondence that Dr. Newell had specifically with Diana Polman. I inquired about the conferenced being open to all parents (as I had heard) and Dr. Newell responding explaining what the conference was intended for, 3 days ago and asked me to share this so that no one would make any travel plans. I only found out about the mistake because here at the PRN we are extremely careful to validate all information and approval before announcing something as important as this. I believe the administrator of this forum re: mentioning doctors names specifically. I apologize for having to break this rule to respond to your aforementioned post. Lynn
  17. Unfortunately, this symposium is not open to the public. I believe it was miscommunicated otherwise. the meeting October 13 and 14 has two purposes: (1) scientific exchange in aid of understanding the mechanism(s) of the disease and (2) physician education and awareness to improve diagnosis and treatment. Collectively, perhaps the already existing advocacy groups, along with the PANDAS community should consider what it would take to have sometime in the future a unique forum for parent advocates, parent awareness, and parent support-- and for something like that we could truly open it to the public.
  18. I know this is last minute but I'm meeting with a congressman at 4:30pm EST, today. He (and his wife) are VERY interested in helping families with PANDAS/PANS/PITANDS. I could use as many "stories" to share with as possible. So we can show "the many faces of this disorder" how it presents differently in each child. A short story, list of symptoms, how long, what you would like changed and most importantly a picture (headshot) f your pandas child/children. If you can put list of symptoms first, than SHORT story and attach picture, would be best format. You can email them to info@pandasresourcenetwork.org​ or mediastories@yahoo.com. With much appreciation and high hopes for healing, Lynn Johnson Executive Director PANDAS Resource Network Also, if you already send your story (a few months ago, when requested) to mediastories@yahoo.com, those stories WILL be shared with the congressman (and his wife)...Thank you!
  19. I know this is last minute but I'm meeting with a congressman at 4:30pm EST, today. He (and his wife) are VERY interested in helping families with PANDAS/PANS/PITANDS. I could use as many "stories" to share with as possible. So we can show "the many faces of this disorder" how it presents differently in each child. A short story, list of symptoms, how long, what you would like changed and most importantly a picture (headshot) f your pandas child/children. If you can put list of symptoms first, than SHORT story and attach picture, would be best format. You can email them to info@pandasresourcenetwork.org​ or mediastories@yahoo.com. With much appreciation and high hopes for healing, Lynn Johnson Executive Director PANDAS Resource Network Also, if you already send your story (a few months ago, when requested) to mediastories@yahoo.com, those stories WILL be shared with the congressman (and his wife)...Thank you!
  20. I'm thinking plasmapheresis might be warranted in such an extreme case. I would definitely do very through Lyme testing (speciality testing) prior to plasmapheresis and/or ivig as both of these procedures can skew the Lyme results. If there is Lyme involved ivig might show Improvment but it most likely just "band-aid" the infection. As Dr J, Dr B and a whole handful of very good Lyme literate doctors have told us regarding Lauren, the ivig is doing a pretty good job keeping the Lyme at bay but you still have to treat it with the correct antibiotics alone or with ivig (different strokes for different folks as every child responds differently). I hope one of the doctors that were shared uncovers all your daughters infectious triggers and you can find the right treatment course quickly! I'm suspecting (but what do I know) that if your daughter also has Lyme that throwing all sorts of different antibiotics at her "willy nilly" could/did actually make her worse. As much as I don't spend any time regularly on this forum these days (the lyme is "killing me") rest assured you are in the hands of wonderful, supportive parents to help you along the way just as they did with me when my daughter was at her worst. My heart goes out to your family and your daughter. Please tell her Lauren would be happy to email her (or facebook) with her if it would be hopeful and helpful.
  21. I personally witnessed Dr. B recently sitting inside the lobby in the main foyer of his office complex when a family came for their first consult and the child refused to go into any exam room. Dr. B, without hesitating grabbed two chairs and moved them into this open foyer (where the child would agree to go and he could talk somewhat privately to mom). You had to be there. It stopped me in my tracks when I saw this! It confirmed in stone what I already knew...that this man truly does this for the children. Your visit will go well. If you are going on Wednesday you will see him at his Stamford office (much, much smaller than his main office and it gets a little crowded) but he makes it work! Good luck (we will be in his Darien office at the same time for day one of Lauren's IVIG)!
  22. Lauren will be having her 4th IVIG next week. Although she is "functional" as in she's back in school and doing well, we believe the IVIG is a HUGE factor in her success. She is diagnosed "immune deficient". Lauren was terribly sick the entire school year prior to her sneezing manifestation. Even though she was always ill and never really improving (missing 26 days of school) her doctor NEVER felt the need to put her on antibiotics-EVER! Her "chronic illness" condition improved over the summer (out of the middle school germ factory) but the day before 6th grade she had the TDap vaccine and her last Guardicil and-WHAMO her PANDAS manifestation. I know every child and every story is different but Lauren had her 1st and biggest improvement when we put her on Azithromyacin (thanks Buster) and even then we didn’t see any improvement until day six of this abx treatment when I decided to double her dose from 250mg/day to 500mg a day. The positive results were almost immediate as within a few hours of this increase her sneezing tic decreased in half! I think Lauren had a terrible infection harboring in her body-forever! I think it’s what caused the autoimmune response/BBB. I believe the abx helped her body rid this infection for the most part. The IVIG #1 helped the body correct this autoimmune response and I think the subsequent IVIG keeps her much healthier than she was prior. We will continue this every 8-10 weeks as long as we feel the benefits exceed any risk and she remains where she's at or keeps improving. My biggest hearts desire is that we keep her "mostly well" as she's in the midst of puberty and than her body will take over. Actually Lauren and our entire family just passed around this terrible cold/virus (who knows) and this time both of my PANDAS children breezed through it with little or any increase in PANDAS/PITANDS symptoms but other times they get a cold (maybe it’s strep) and Lauren/Audrey backslide a little but we always get them back. I really think the prophylactic azithromyacin daily also helps significantly. Lauren DOES still have this “eye flicker” (as I call it). I never much noticed it but a few times prior to her first IVIG but I was just watching one of the old news stories and I noticed it “plain as day”. It’s crazy looking. Does anyone else’s child do this? Check it out! She does it at exactly 48 seconds into the video.. http://www.wavy.com/dpp/news/health_news/Sneezing-12-year-old-gets-sleep-test She still does this routinely. Sometimes more than others. Is she still battling “demons” in her body? Does she have Lyme like her sister and I (even though her Igenex testing showed only the 41 band and one other indeterminate band), who knows!?! We just take it one step at a time and trust our doctor(s) who work with us to make decisions, the best we can, as we go along!
  23. I don't know about those bands. I looked on my Igenex test and the only one that is double starred is 41 and that is not considered "lyme-specific". I don't think it looks good to have three of these though but I just don't know. I remember Dr. Jones telling me that he disagrees with the cdc criteria and he even had a problem with Igenex' way of determining who is positive. I can't remember the details of his comments though but the gist was that the really important markers for lyme are not counted and the ones that are not important are counted. So you could have five bands indicating you are cdc positive and they not be the right lyme specific bands. In other words he would not assume lyme from those bands. On the flip side you could have one lyme-specific band and be negative but really be positive. I hope I have represented what he said accurately. It was a year ago so I don't remember exactly what he said. Next time I see Dr Beals I will ask him about bands 58 and 66. Of course these tests do not test for bands 31 and 34 so I would definitely do Igenex or see a lyme doctor for an opinion b/c either one of those bands could also be positive and that would be enough in and of itself. Dr Beals is great. I think you will really like him. The band that will not be tested on a WB from your doctor--Band 31--was the kicker in Evan's dx. It is Lyme specific and will only show up if a person has had lyme over a year. Makes you want to scream "How in the world would there be an antibody in a person's bodyfor a surface protein that is Lyme SPECIFIC if Bb wasn't around!!! Dawn That's true.. Its crazy that all lyme tests do not test for this band. It means the person was exposed to lyme over a year before b/c it takes a year to show up in the blood. My youngest (DD11) Audrey and myself were both band 31 positive (IgG & IgM) along with other multiple bands. The many LLMD's we have seen believe that I have had Lyme for at least 14 years and most likely gave it to Audrey in-utero. I was told that there are no such thing as false positives BUT many cases of false negatives (more than 50% false negative when standard two tier testing is used)! A friend of mine has been treating her whole family for lyme for over 6 months (her kids did not test positive 6 months ago but were treated by clinical diagnosis) now they are all testing positive. I'm not a scientist/researcher or doctor but many have explained to me how lyme spirocetes hide in the body/in the cells and if you put someone on a "cyst-buster" abx it causes the DNA to shed. This is so complex! We've also been tested for HSV, EBV, and HCV to rule those out as a possible cause of symptoms, (all negative) along with about every known blood test known to man-kind! The only test we have ever had a positive result on is MP IGg (and Audrey constantly has elevated ASO/Anti titers like a roller coaster ride regardless of he abx she's been on continuously for over 9 months now)! Lyme stinks!
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