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EAMom

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  1. Like
    EAMom got a reaction from MomWithOCDSon in Kiki Chang on antibiotics and PANS   
    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
  2. Like
    EAMom got a reaction from bobh in Kiki Chang on antibiotics and PANS   
    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
  3. Like
    EAMom got a reaction from Sirena in desperately sick/starting Rituximab infusions - what to expect?   
    I don't think Dr. B is a lyme expert (he's not an LLMD), but I think he knows enough to test for Lyme (esp being in CT!). IMHO I would treat the Lyme (did he test for any coinfections like Babeisa or Bartonella?) before considering Rituximab. Rituximab may decrease the autoimmune response to Lyme (don't know why it wouldn't) but since it suppresses the immune system, I'm worried that won't be enough and it may make the underlying infection harder to treat in the long run.
     
    I know Prednisone (esp. long term) is contraindicated in Lyme, and I would think Rituximab would be even worse (in terms of immune suppression).
     
    If he is worse on the doxy it may be a herx, or he may not be tolerating it for other reasons. I know a LLMD could help you sort this out. Some also use herbal antibiotics.
     
    Also, if tick borne diseases are your underlying problem, treating those may be enough, w/out going down the Rituximab road.
  4. Like
    EAMom got a reaction from Sirena in desperately sick/starting Rituximab infusions - what to expect?   
    I would be worried that there is still an infection, esp with the history of Lyme. I wonder if Lyme is still there (and or coinfections like Babesia or bartonella).
  5. Like
    EAMom got a reaction from Cleopatra in 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
  6. Like
    EAMom reacted to Gpookie in Could HPV virus be a trigger to PANS/Pandas symptoms?   
    Anything that affects the immune system can trigger PANS symtpoms.
  7. Like
    EAMom reacted to bws1565 in New Yale Vaccine Study   
    Another fine point to the non vaxers!
     
    We have stopped vaccinating our children 5 years ago. I am sorry I did not know these things sooner, sorry about every vaccine I gave my kids.
    My older kids, born in the 90's were definitely adversely affected. The unvaccinated ones are such social, bright and agreeable kids.
     
    You can always decide to vaccinate, but never undo a vaccine.
  8. Like
    EAMom reacted to dasu in New Yale Vaccine Study   
    Thank you both for sharing. I found wakefield's point on how environmental effects can combine to produce more severe issues fascinating.
     
    One study I would like to see is adopted kids in P families. I know of one family where both the biological child and adopted child have P.
  9. Like
    EAMom got a reaction from mama2alex in New Yale Vaccine Study   
    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
  10. Like
    EAMom got a reaction from MomWithOCDSon in "My Kid Is Not Crazy" screening 2/23/17 7 pm Menlo Park, CA   
    Northern CA Parents, please come to the screening of My Kid Is Not Crazy on February 23 in Menlo Park:

    "PANDAS NETWORK IS PROUD TO PRESENT A SPECIAL FRIENDS & FAMILY SCREENING OF: MY KID IS NOT CRAZY, A SEARCH FOR HOPE IN THE FACE OF MISDIAGNOSIS.
    Come to the screening where filmmaker, Tim Sorel, will be present to discuss the making of the film.
    My Kid Is Not Crazy, tracks the journey of six children and their families as they become tangled in the nightmare of a medical system heavily influenced by the pharmaceutical industry. Here it is common for a healthcare provider to prescribe a young child with a Selective Serotonin Uptake Inhibitor (SSRI) but hesitates to prescribe an antibiotic to counteract a potential infectious-based trigger. For some of these kids, what happens after several years is shocking and sad."


    Here's a link to info on Facebook https://www.facebook.com/events/1288292294567785/

    Link to buy tickets https://www.eventbrite.com/e/my-kid-is-not-crazy-a-search-for-hope-film-screening-tickets-30312376133


  11. Like
    EAMom reacted to Sirena in Cefdinir VS Amox   
    I'd ask for cefdinr. My son was on it once for a long time while waiting for an oral surgery date. Maybe a 3rd antibiotic worth trying...meanwhile, you'll need to figure out if there is a reservoir of infection (like tonsils) and where things stand with inflammation...
  12. Like
    EAMom reacted to sf_mom in Tick bite - lyme. can we test the bug?   
    Bay Area Lyme Foundation will test your tick for free. They test for 6 different pathogens but not Bartonella and Babesia.
     
    Here is all the information.
     
    http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/
  13. Like
    EAMom got a reaction from mama2alex in Vaxxed Movie   
    Here's a good summary on what has been going on. Please share


    To buy tickets https://www.angelikafilmcenter.com/nyc/film/vaxxed-from-cover-up-to-catastrophe

    More info on FB https://www.facebook.com/permalink.php?story_fbid=673611479448561&id=669084493234593&substory_index=0&hc_location=ufi

  14. Like
    EAMom got a reaction from Sirena in FREE tick testing   
    "Ticks will be tested for 6 pathogens: Borrelia burgdorferi, which causes Lyme disease;Borrelia miyamotoi, which causes tick-borne relapsing fever; Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis, Ehrlichia chafeensis, which causes human monocytic erhlichiosis, and Rickettsia rickettsii, the agent of Rocky-mountain spotted fever, and the protozoan pathogen, Babesia microti."

    More info here http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/


  15. Like
    EAMom got a reaction from philamom in PANDAS documentary kickstarter   
    Please watch, share, and support https://www.kickstarter.com/projects/1407649958/my-kid-is-not-crazy
     
    Here is their FB page: https://www.facebook.com/mykidisnotcrazy?notif_t=page_invite_accepted


  16. Like
    EAMom got a reaction from MomWithOCDSon in PANDAS documentary kickstarter   
    Please watch, share, and support https://www.kickstarter.com/projects/1407649958/my-kid-is-not-crazy
     
    Here is their FB page: https://www.facebook.com/mykidisnotcrazy?notif_t=page_invite_accepted


  17. Like
    EAMom reacted to rowingmom in Brain Maker -- treating PANDAS (or Tourette's) with probiotic enema   
    I have often told myself that if DD13 relapses, we will try this route.
     
    This site piqued my interest. Apparently Bravo sells suppositories which would be a little less invasive than the enema. Not sure if they are sold in the US.
     
    http://naturalsolutions.nz/bravo
  18. Like
    EAMom reacted to kim in link to Oakland School Board Meeting SB277 VIDEO   
    I have donated already and I hope others from other states will too.
     
    Was anyone else astounded that Carson made the remarks that he did during the debate? I knew Trump's stance, although I was not impressed with his remarks but my mouth fell open when Carson chimed in.
  19. Like
    EAMom got a reaction from mama2alex in link to Oakland School Board Meeting SB277 VIDEO   
    Also, please consider donating to help stop #SB277. Thanks!
     
    https://www.gofundme.com/SB277Referendum
  20. Like
    EAMom reacted to nicklemama in 6 yo w/Childhood Onset Bipolar Diagnosis   
    Wow, thanks for thinking about us. A lot has happened in three years. After IVIG twice and relapsing, I took my son to an LLMD 2.5 years ago. He has Lyme, ehrlichia, anaplasma and bartonella. Treatment has brought the healing we were looking for. He is still being treated with antibiotics and supplements. He is as normal as the next kid. He can get hyper and overstimulated by other hyper kids but no one would tell you he acted out of the ordinary for an 11 yo boy. He goes to middle school in a few weeks and he's going into the academically gifted program.
     
    I urge you to find a good and reputable LLMD to do a thorough evaluation and testing of your son. Unless you see someone who truly knows and is qualified to diagnose Lyme and co infections, you will not get a proper evaluation for Lyme. Have you seen a PANDAS doctor?
     
    After my experience with my son, I would never accept a psychiatric diagnosis until PANDAS, PANS and Lyme/co infections had been thoroughly ruled out by qualified doctors.
     
    I wish you the best in your search for answers and healing. Contact ILADS for recommendations for doctors in your region. I'll send you a pm.
  21. Like
    EAMom reacted to pr40 in 6 yo w/Childhood Onset Bipolar Diagnosis   
    just want to second what nicklemama said, "would never accept a psychiatric diagnosis until PANDAS, PANS and Lyme/co infections had been thoroughly ruled out by qualified doctors."
    as you can see from many other posts on this forum, traditional psychiatric diagnosis and treatment don't hold water. Start your child on an anti-inflammatory regime, ibuprofen, fish oil, etc. long term abx, and see if there are changes.
  22. Like
    EAMom got a reaction from kim in New interview with Dr. Wakefield   
    This is a really good interview w/Dr. Wakefield. Please watch and share.
     

  23. Like
    EAMom got a reaction from kim in Sacramento Observer article on CDC Whisteblower   
    Here's a very good article from Thinking Mom's Revolution re the CDC whistleblower. Tics are mentioned! http://thinkingmomsrevolution.com/the-thompson-transcripts-shocking-revelations-by-the-cdc-whistleblower/

    Here's a link from the article to easily contact your reps:
    http://capwiz.com/a-champ/issues/alert/?alertid=67424921&queueid=%5Bcapwiz%3Aqueue_id%5D
  24. Like
    EAMom got a reaction from searching_for_help in New interview with Dr. Wakefield   
    This is a really good interview w/Dr. Wakefield. Please watch and share.
     

  25. Like
    EAMom reacted to NancyD in New interview with Dr. Wakefield   
    Excellent interview. Thank you for sharing, eamom!
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