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Everything posted by laurenjohnsonsmom

  1. laurenjohnsonsmom

    Time to Make Some Noise

  2. laurenjohnsonsmom

    spreading awareness

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


    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. laurenjohnsonsmom

    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. 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
  6. BUMP... Thank you to everyone who has participated thus far!
  7. laurenjohnsonsmom

    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. laurenjohnsonsmom

    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. laurenjohnsonsmom

    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. laurenjohnsonsmom

    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. 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
  12. 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...
  13. 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???
  14. 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....
  15. laurenjohnsonsmom

    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!!!!
  16. laurenjohnsonsmom

    We are Doing Something New!

    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.
  17. laurenjohnsonsmom

    PANDAS Network Newsletter

    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
  18. laurenjohnsonsmom

    PANDAS Network Newsletter

    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
  19. laurenjohnsonsmom

    PANDAS Network Newsletter

    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.
  20. laurenjohnsonsmom

    Want to Share your story?

    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!
  21. laurenjohnsonsmom

    Want to share your story?

    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!
  22. laurenjohnsonsmom

    PANDAS has stopped her speaking

    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.
  23. http://hamptonroads.com/2010/09/eastern-shore-doctor-faces-probation-over-lyme-disease-cases'>http://hamptonroads.com/2010/09/eastern-shore-doctor-faces-probation-over-lyme-disease-cases Published on HamptonRoads.com | PilotOnline.com (http://hamptonroads.com) Eastern shore doctor faces probation over Lyme disease cases A doctor on the Eastern Shore known for treating people with Lyme disease has been put on indefinite probation by the Virginia Board of Medicine and permanently banned from prescribing narcotics. The action is the latest in a string of medical cases involving prescription painkillers, and it's also the latest salvo in a national controversy about the treatment and existence of what some refer to as chronic Lyme disease. Dr. Geoffrey Gubb, who has a family practice in Belle Haven, was accused by the board of treating 15 patients with high-powered pain drugs while failing to monitor their condition or properly document diagnoses. Gubb, 73, has until Oct. 16 to ask for an appeal on the matter. If he declines, the order will become final that day. In an interview last week, Gubb said he has decided to close his family practice at the end of the month. He said he treats about 800 patients, most of whom are from Virginia, Maryland and Delaware. About 600 of them have Lyme disease, he said, and many crossed the Chesapeake Bay Bridge-Tunnel from Hampton Roads to get a type of treatment that most doctors refuse to prescribe because it goes against recommended guidelines. Lyme disease is a bacterial infection transferred to humans through the bite of an infected deer tick. Symptoms vary but usually include joint and muscle aches, headaches, fatigue and fever. Most mainstream scientists and doctors say the disease, which is on the increase, can be cured with antibiotics in less than a month. But there's a group of people with long-term health problems who call their condition chronic Lyme disease. And there's a small group of doctors, including Gubb, who believe that in some cases the bacteria slip into the bloodstream and produce an ailment that can come and go, and linger for months or years. These doctors advocate and prescribe long courses of antibiotics. Because of the ongoing pain symptoms, they say, narcotics also can be part of the treatment. The Infectious Diseases Society of America and the American Academy of Neurology, however, say that there's no scientific evidence to support this theory, and that the prolonged use of antibiotics and prescription painkillers is dangerous. Spurred in part by an investigation by the Connecticut attorney general, the infectious disease society appointed an independent panel to review its treatment guidelines for Lyme disease. In April, the panel concluded there was no scientific evidence to support the prolonged use of antibiotics. Further, the panel said, symptoms attributed to "chronic or persistent Lyme disease," such as fatigue and cognitive problems, are seen in many other clinical conditions and are also common in the general population. "It would thus be clinically imprudent to make the diagnosis of Lyme disease using these nonspecific findings alone," the panel noted. Dr. Edward Oldfield, chief of the infectious disease division at Eastern Virginia Medical Center, said diagnosing a condition that the society doesn't recognize is troubling on several fronts. One is the risk of misdiagnosis. The person's symptoms could be caused by conditions such as cancer or lupus, and a misdiagnosis would delay treatment. Prolonged use of antibiotics also can lead to side effects such as nausea and IV infections. Also, there's the cost of a treatment that scientific evidence has not shown is effective. "It's not that these people do not have real symptoms, but that medicine does not have a solution for them," Oldfield said. The guidelines were criticized by groups that advocate the long-term treatment, such as the International Lyme and Associated Diseases Society. In Connecticut, where Lyme disease was discovered in the mid-1970s, a law was passed last year allowing doctors to prescribe long-term antibiotics in treating "persistent Lyme disease" without fear of sanctions from state health regulators. Earlier this year, the National Capital Lyme and Tick-Borne Disease Association asked state legislators in Virginia to pass a similar bill. The bill, however, was passed over in committee after concerns were raised about whether the measure would lead to treatments that could mask - or cause - larger health problems. "It's very disturbing to see clinical guidelines based in scientific evidence politicized," Oldfield said. More than 100 supporters, however, showed up at a February hearing in Richmond on the matter, saying they must travel hours to find treatment for what they call chronic Lyme disease. Some said they live in fear that their doctors will be put out of business by medical regulators. One key difficulty with Lyme disease is that the blood test used to diagnose it is not always conclusive and is riddled with false positives. In some regards, the condition has similarities to fibromyalgia, another mysterious pain ailment that can be difficult to diagnose. Some critics regard these conditions as psychosomatic, at least in some cases, another frustration to those who suffer from chronic pain. But the diagnostic fuzziness also provides an opportunity to abuse prescription painkillers, a problem one federal agency estimates has surged by 400 percent during the past decade. Board of Medicine documents show that Gubb had prescribed narcotics for periods ranging from seven months to more than two years, failed to develop treatment plans, and in some cases did not examine the patient. In one case, a patient had received narcotics prescriptions from other health care providers during the same period. In another case, Gubb prescribed narcotics by telephone. Gubb said he has changed his record-keeping and taken a class in pain management. He also has "weeded out" people he believes were abusing painkillers. "Pain treatment is a basic human right," he said. "Undertreatment and nontreatment of pain is malpractice, so you're damned if you do and damned if you don't." The case came to the board's attention, Gubb said, after a Maryland pharmacist reported him when filling a prescription for one of Gubb's patients. He said it was the second time he's been investigated by the board. Gubb and his lawyer, Michael Goodman, said they are still reviewing his options regarding the Virginia board's action. However, Gubb said he has already told his patients with Lyme disease he is closing up shop. One of those patients, 45-year-old Lisa Lane, had been seeing Gubb for more than three years. She said she'd been struggling with pain and fatigue for about a year before that, and a client of hers suggested she see Gubb. He diagnosed her with Lyme disease and put her on IV antibiotics and prescription painkillers. She moved from Newport News to the Eastern Shore to be nearer to him, so she was upset when she found out he is no longer able to treat her. She ran out of pain patches a week ago. "I wake up in the night screaming in pain," she said. Lane said she believes hers is one of the cases cited in the Board of Medicine investigation that led to Gubb's probation. "They say it's because of him writing the scrips, but I think they are persecuting Lyme doctors." Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@ pilotonline.com
  24. laurenjohnsonsmom

    Dr. B

    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)!
  25. laurenjohnsonsmom

    I have been told only 1 IVIG

    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!