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


      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


  • Content count

  • Joined

  • Last visited

  • Days Won


EAMom last won the day on August 10 2017

EAMom had the most liked content!

About EAMom

  • Rank
    Advanced Member

Profile Information

  • Gender
  • Location
    Northern CA

Recent Profile Visitors

14,326 profile views
  1. Low Dose Naltrexone

    Hi Eliself, Do you know what dose you were giving? Did the flare happen immediately after the dose? Was this for you or your child?
  2. Hi, I'm interested in learning more about Low Dose Naltrexone. Please comment if you have any information or experiences! Thank you!
  3. here's the link http://www.mdedge.com/clinicalpsychiatrynews/article/131114/pediatrics/antibiotics-have-role-pans-even-no-infection
  4. Hey, I'm putting this article here b/c when I've searched for it recently it's been behind a paywall...but today it's not. So now it's here for safe keeping in case it becomes inaccessible again. Antibiotics have a role in PANS even with no infection Publish date: February 9, 2017 By: M. Alexander Otto Clinical Psychiatry News EXPERT ANALYSIS FROM THE PSYCHOPHARMACOLOGY UPDATE INSTITUTE SAN FRANCISCO – Antibiotics might help in pediatric acute-onset neuropsychiatric syndrome (PANS) even if there’s no apparent infection, according to Kiki Chang, MD, director of PANS research at Stanford (Calif.) University. first step at Stanford is to look for an active infection, and knock it out with antibiotics. Dr. Chang has seen remarkable turnarounds in some of those cases, but even if there’s no infection, “we still do use antibiotics.” There are positive data, “although not a lot,” indicating that they can help. Some kids even seem to need to be on long-term antibiotics, and flair if taken off long after infections should have been cleared. Dr. Kiki Chang “We don’t know what’s going on. We try to stop antibiotics if we can; if patients relapse, we think the benefit [of ongoing treatment] outweighs the risks. Some kids just have to be on antibiotics for a long time, and that’s an issue.” Perhaps it has something to do with the anti-inflammatory properties of antibiotics like azithromycin and amoxicillin, or there might be a lingering infection, he said at a psychopharmacology update held by the American Academy of Child and Adolescent Psychiatry. PANS is a recently coined term for the sudden onset of obsessive compulsive disorder (OCD) within a few days of an infection, metabolic disturbance, or other inflammatory insult. Anxiety, mood problems, and tics are common. There might be severe food restriction – only eating white foods, for instance – that are not related to body image. PANS broadened the concept of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), which was first described in 1998, although it’s been known for generations that acute streptococcus infections can lead to abrupt psychiatric symptoms. PANS is the topic of ongoing investigation, and Dr. Chang and many others are working to define the syndrome and its treatment, and trying especially to determine how PANS differs from typical OCD and other problems with more insidious onset. The idea is that inflammation in the patient’s brain, whatever the source, triggers an OCD mechanism in susceptible patients. As a concept, “we believe it’s true,” he said. For now, it’s best to refer suspected cases to one of several academic PANS programs in the United States, as diagnosis and treatment isn’t ready for general practice, he said. If more than antibiotics are needed, Stanford considers targeting inflammation. Some children respond to easy options such as ibuprofen. Dr. Chang has seen some helped with prednisone, but treatment is tricky. There might be an occult infection, and PANS can present with psychiatric issues that prednisone can make worse, including depression and mania. Intravenous immunoglobulin is another of the many options, “but we really need about four treatments” to see if it helps. Cognitive behavioral therapy and family support also helps. As for psychotropic medication, “we often use them, but they rarely take away the acute symptoms,” and PANS children seem especially sensitive to side effects. “I’ve seen many of them become manic on SSRIs. I’ve seen some of them have very strong [extrapyramidal symptoms] with atypical antipsychotics. You have to be very careful; we don’t have any good studies” of psychiatric drugs in this population, he said. At the moment, PANS seems to be more common in boys than girls, and most patients have a relapsing/remitting course and a family history of autoimmune disease. Suicidal and homicidal ideation can be part of the condition. Dr. Chang believes PANS could be part of the overall increase in autoimmune disease and psychiatric disorders in children over the past few decades. “We have more kids who have special needs than ever before,” large, objective increases in bipolar, autism, and other psychiatric problems, as well as increases in psoriasis, nut allergies, and other autoimmune issues. “What causes it is harder to say, but there has been a change for sure in kids and their immune system development that does affect the brain, and has probably led to more neuropsychiatric disturbances,” he said. “No one talks about it. Everyone thinks that it’s some sort of pharmaceutical industry conspiracy” to sell more drugs by increasing scrutiny of children. “I think it’s caused by something in the environment interacting with genetics,” whether it’s infections, toxins, or something else. “We don’t know. Any kind of inflammation can be a trigger” and “we know inflammation” is key to “many psychiatric symptoms. I do think there’s something going on with kids over the last 30 years,” he said. Dr. Chang is a consultant for and/or has received research support from Bristol-Myers Squibb, Lilly, Merck, GlaxoSmithKline, and other companies. aotto@frontlinemedcom.com
  5. Dr. Murphy or Dr. Latimer

    Moleculera just posted this on their FB page: Excerpts from an interview with pediatrician and immunologist Dr. Seshagiri Rao, of Texas: "I think parents are very smart. Sometimes I see parents whose child has just developed symptoms, maybe a month ago, two months ago. These days with social networking, parents are very well connected and most of the time it is not the pediatricians but other parents who guide them." "Its very important for pediatricians and primary care physicians to trust the parents. If the doctor says 'I dont believe in PANDAS', the parents are left living a very difficult . That's what some of them call it. If the physician cannot give treatment, they can at least support the parents and try to find someone familiar with the disorder. That does not happen and it's a shame." "When I started, I used to see maybe 8 or 10 cases of PANDAS each year. Now I see around 8 new cases every week. Ive got patients from Georgia, North Carolina, Alabama, Tennessee, Arkansas and Oklahoma, mainly because they cannot find anyone who will acknowledge the condition and treat it."
  6. Dr. Murphy or Dr. Latimer

    I've heard Murphy is mainly good for diagnosis, not so stellar for treatment. You have 2 leading PANDAS physicians in Texas. I would not recommend travelling to the East Coast in your case. Here's a provider list (by state) from Pandas Network http://www.pandasnetwork.org/research-resources/us-providers/ Dr. Sesgagiri Rao (Leading PANDAS Physician) Immunologist 972-964-7374 Plano, TX will treat more complicated cases involving PANDAS and Autism Dr. Bruce Russell (Leading PANDAS Physician) Pediatrician 361-749-1930 Port Aransas, TX May not be accepting new patients. Will treat more complicated cases involving PANDAS and Autism
  7. I love this part...you know he's GOT to be thinking VACCINES (at least that was my first thought) but he just can't say it! “We have more kids who have special needs than ever before,” large, objective increases in bipolar, autism, and other psychiatric problems, as well as increases in psoriasis, nut allergies, and other autoimmune issues. “What causes it is harder to say, but there has been a change for sure in kids and their immune system development that does affect the brain, and has probably led to more neuropsychiatric disturbances,” he said. “No one talks about it. Everyone thinks that it’s some sort of pharmaceutical industry conspiracy” to sell more drugs by increasing scrutiny of children. “I think it’s caused by something in the environment interacting with genetics,” whether it’s infections, toxins, or something else. “We don’t know. Any kind of inflammation can be a trigger” and “we know inflammation” is key to “many psychiatric symptoms. I do think there’s something going on with kids over the last 30 years,” he said.
  8. Was it a tetanus only shot (don't think that's available in the US) or the Tdap? Many PANDAS parents (at least the ones I've encountered in FB groups) have stopped vaccinating b/c the risk of vaccination (in a child with PANDAS/autoimmune dz) outweighs potential benefits. There is a teen in one of the FB groups (who was previously stable PANDAS) who has been having ongoing (months) severe issues (meaning hospitalizations, seizure like activity) after tdap and meningitis vaccines. Also, don't forget that you can draw titers to prove immunity (that's what we did for tetanus) if there were prior vaccines. That said, it's hard to say that even if the titers were low, that vaccination would be a good idea for our kids. I'm glad he's doing better now. It's hard when there are ongoing insults to the immune system (vaccines, then illness, also allergies this time of year).
  9. It sounds like you have PANDAS with onset in childhood. Here's a thread on adult PANDAS (there are others): http://latitudes.org/forums/index.php?showtopic=16422&page=2
  10. Cytokines and inflammation are discussed! "There are several ways in which a severe reaction to airborne allergens might tip the scales for someone at risk for suicide, but here’s one. When a speck of pollen from the air comes into contact with immune cells in the nose, the cells release cytokines—molecules that cells use to communicate messages to one another. Postolache and others believe cytokines might drift through the nose to enter the brain. There, the cytokines might disrupt the brain’s delicate chemical soup, shifting the balance from feel-good chemicals to toxic ones that may trigger anxiety and impulsive behavior. Besides the nose, cytokines might also influence the brain by traveling through nerves, or by prompting immune cells to mistakenly attack healthy brain cells. These cytokines, then, may play a role in the angst and impulsiveness that drives people to take their lives. Indeed, Postolache and others found elevated cytokine levels in the brains of suicide victims." https://www.theatlantic.com/health/archive/2017/04/the-troubling-link-between-allergies-and-suicide/523608/?utm_source=fark&utm_medium=website&utm_content=link&ICID=ref_fark
  11. This blog is wonderful! Great PANDAS/PANS article to read and share. https://walkinginquicksand.com/2017/04/19/what-you-should-know-if-youve-ever-wondered-if-your-child-had-pandas-or-pans-even-if-your-doctor-ruled-it-out/
  12. New Yale Vaccine Study

    Along the same line of whether vaccines may have set the stage for autoimmunity... Listen to this podcast (#4 interview with Wakefield). The whole podcast is excellent but this part pertains to infection triggered autoimmune dz (e.g. Pandas): At 6 1/2 minutes into it (until 8 1/2 minutes) he talks about ground squirrels in Russia . In some areas, they would all die if exposed to the plague bacteria. In other areas, it was a benign infection. After 16 years of research they figured out the difference was that the squirrels that ate plants growing in areas with high heavy metal content were the ones that died...it was the INTERACTION between 2 environmental agents that affected the outcome of the infection. 👉🏼Wakefield goes on to talk about lab animals that are resistant to autoimmune dz, and giving them an infection (leishmaniasis). Then you give them mecuric acid (Mercury)and they get autoimmune dz. So, that what happened to my kid strep + heavy metals = pandas. Of course there are lots of unanswered questions (like what percent of kids would have PANDAS even if they weren't vaccinated) and the role of genetics. I don't think it's binary (Wakefield uses that word! 😆). I'm sure there are other players (diet, genetics, other toxins, co-infections, number of strep infections and if they are treated) in this puzzle. https://itunes.apple.com/us/podcast/how-to-end-the-autism-epidemic/id1171633435?mt=2&i=377807694
  13. New Study: "This pilot epidemiologic analysis implies that the onset of some neuropsychiatric disorders may be temporally related to prior vaccinations in a subset of individuals." "This study examines whether antecedent vaccinations are associated with increased incidence of obsessivecompulsive disorder (OCD), anorexia nervosa (AN), anxiety disorder, chronic tic disorder, attention deficit hyperactivity disorder, major depressive disorder, and bipolar disorder in a national sample of privately insured children." #RFKcommission http://journal.frontiersin.org/article/10.3389/fpsyt.2017.00003/full
  14. This is another good article on the Lewis Group study https://medium.com/@jbhandley/diabolically-dishonest-lewin-groups-mmr-autism-sibling-study-f83af102bb38#.ng0ypb71u
  15. Here's an article from 2015 about using glutathione vs NAC for skin picking. https://med.stanford.edu/news/all-news/2015/07/antioxidants-help-treat-skin-picking-disorder-in-mice.html Antioxidants help treat skin-picking disorder in mice, researcher says Two antioxidant supplements were found to be effective in treating a skin-picking disorder in mice, suggesting they may be useful in people with the condition. JUL 132015 Joseph Garner and his colleagues found that two antioxidant supplements were effective in helping mice with a skin-picking disorder. Steve Fisch Two antioxidant supplements are effective in treating skin-picking disorder in mice, according to a study led by a Stanford University School of Medicine researcher. The finding suggests that people with the potentially serious disorder might benefit from this therapy. An estimated 4 percent of the population — or about 1 in 25 — suffer from skin-picking disorder, in which repeated, compulsive picking or scratching of the skin can lead to severe disfigurement and life-threatening infection. Skin picking is also common among laboratory mice, which may develop potentially fatal ulcerative dermatitis, skin lesions, caused by excessive grooming. The condition is the single leading avoidable cause of death among laboratory mice, said Joseph Garner, PhD, associate professor of comparative medicine and senior author of the study, which was published online today in PLOS ONE. The lead author is Nneka George, DVM, of the University of North Carolina at Chapel Hill. In the study, the researchers experimented with two antioxidant supplements — N-acetylcysteine and glutathione — to treat mice with skin-picking disorder. NAC is used by cells to make glutathione, which is the brain’s main, naturally occurring antioxidant. NAC has been used experimentally in people with a variety of conditions, including Parkinson’s disease, autism and cystic fibrosis, and reports of individual cases suggest it could be useful in treating skin picking. Potentially fewer side effects from glutathione“With NAC, almost every mouse got a little bit better,” Garner said. “But there is a huge variability is response, anywhere from a slight improvement to complete cure.” NAC also took a long time to show an effect: If an animal was cured, it took six to eight weeks. With glutathione, the pattern was very different. Fifty percent responded, but in these animals it was a rapid, all-or-nothing response: If they got better, they were completely cured in two to three weeks. The animals that didn’t get better were worse off to start with, the researchers found. Garner said the results suggest that glutathione might be an even more powerful therapeutic, with potentially fewer side effects. “What’s exciting is that we have a compound that works. It works as well as NAC. It’s clearly working differently, or at least more directly. This different response profile gives us some hope that there may be some nonresponders, or people who can’t tolerate NAC, who may be helped by glutathione,” he said. This can lead to really serious disfigurement in extreme cases. Skin-picking disorder is a surprisingly common condition, yet many patients avoid seeking help because of the shame and embarrassment, Garner said. “This can lead to really serious disfigurement in extreme cases,” he said. “People suffer in complete silence. They think they are the only one who has it, despite the fact that it’s very common, and it kills people.” By the time people do seek help, about 35 percent have required some kind of antibiotic treatment, and 5 percent have required intravenous antibiotics to treat potentially life-threatening infections, he said. Some are referred for psychiatric help. Although cognitive behavioral therapy can be an effective form of treatment, there are few practitioners equipped to do this form of therapy, Garner said. People with the condition also may be prone to compulsive hair pulling, another body-focused, repetitive-behavior disorder. A clinical trial among patients with the hair-pulling disorder, also known as trichotillomania, showed NAC to be an effective treatment in 56 percent of cases. Study methodsIn the latest study, the researchers selected 16 mice with lesions on the face, neck and limbs — signs of skin picking. Because the condition is painful and potentially fatal, the researchers treated all the mice with a thin film of topical antibiotic and steroidal ointment to relieve their discomfort. A third of the mice received a high dose of NAC in their drinking water. Another third were given drops of glutathione on the nose. (Because mice are nose breathers, they easily inhaled the compound.) A control group was given neither of the compounds. Almost all the animals treated with NAC showed some improvement, though the improvement was slow. By the end of the study, 40 percent were fully cured. Among the animals treated with glutathione, results were more rapid: Within two to four weeks, about half were cured; the other half did not respond. There was no change among the control animals. People suffer in complete silence. They think they are the only one who has it, despite the fact that it’s very common, and it kills people. Garner believes that NAC works by combating oxidative stress that causes certain cells in the brain to die or become inactive. “Our thought is maybe NAC works because in the brain it is the precursor to glutathione, and the brain has to make glutathione to protect itself against oxidative stress,” he said. NAC, however, isn’t easily tolerated by many people, causing gastrointestinal distress, he said. Intra-nasal glutathione, on the other hand, may avoid these potential side effects by bypassing the gut and liver, delivering the compound directly to the brain. He first presented the results in April to a patient advocacy group. “The sense of excitement from patients, advocates and researchers was palpable,” he said. “This is the first new potential drug for this disorder in years.” Garner said his next step is to plan a clinical trial in patients to test the value of intra-nasal glutathione. Another Stanford co-author of the study is research associate Jerome Geronimo. The experiments were conducted by researchers at the University of North Carolina Chapel Hill. The study was funded by the Timothy Foundation, a private nonprofit supporting research in body-focused repetitive behaviors, and by the Division of Laboratory Animal Medicine at UNC-Chapel Hill. Information about Stanford’s Department of Comparative Medicine, which also supported the work, is available at http://med.stanford.edu/compmed/. ByRUTHANN RICHTERRuthann Richter is the director of media relations for the medical school's Office of Communication & Public Affairs. Email her at richter1@stanford.edu.