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pr40

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  1. Like
    pr40 got a reaction from wisdom_seeker in Appealing HD IVIG/PANS denial -- do/don't mention IgG deficiency?   
    you say: "But... what if insurance were to approve say 500mg/kg IVIG product for the IgG deficiency, and my doctor prescribed 1.5 g/kg, would insurance pay for the administration and 1/3 of the Ig product, or nothing? "
    it strikes me that this is not a possibility at all since they would approve only what your dr ordered. if your dr did not order LD, they would not make their opinion on it at all. in other words, panel only decided on given orders. and yes, I believe, you are correct to argue with their wording blood product to help boost your body defenses -- and offer a different reason for IVIG. this is all very, very technical and the only way to win is on technical grounds. for the same reason, you don't need to mention additional benefits since the panel is not there to consider those.
    Further, you can ask a representative what IVIG is approved for. they are there to HELP you and have to answer that question in most helpful way.
    best of luck!
  2. Like
    pr40 reacted to lw47 in FYI: abx lyme study   
    This is a very bad study. 12 weeks of antibiotics does not constitute long term treatment for someone with Lyme disease for years. I had Lyme disease undiagnosed for 9 years, and was treated by a LLMD for 4 years with excellent improvement. I am off antibiotics now and doing well. 12 weeks of antibiotics is nothing for someone with chronic Lyme. Infectious disease doctors are some of the worst for posting studies nay saying treatment of chronic Lyme. There is hope. I am proof of it.
  3. Like
    pr40 reacted to qannie47 in nose bleeds   
    PR40...my non-pandas son, was Vit C depleted due to food intolerance issues. He had nosebleeds and his gums bleed until we increased his vit c. (he came up low on vit c on a blood profile). We were not even worried about the gums/nose bleeds ( secondary concern), but pleasantly surprised that both went away when we began supplementing vit c.
     
    your post rung a bell...hope our experience helps....
  4. Like
    pr40 reacted to mama2alex in nose bleeds   
    Toxic mold can cause nose bleeds as well. Have you tested her and/or your home?
  5. Like
    pr40 reacted to MomtoJake in nose bleeds   
    My son's PANDAS doc said nosebleeds can be due to strep or other bacteria colonized in the nose. His turned out to be MRSA. He is having nosebleeds again so we are going to the pediatrician to have swabs done again. He is having one every other day, sometimes multiple times. Am going to look into the sups that llm mentioned!!
  6. Like
    pr40 reacted to lnn in nose bleeds   
    Not sure about nose bleeds. But DD was having problems with spontaneous bruising on her inner arms when she was on certain medications. She started rotating quercetin and bilberry - both contain anthocyanins which strengthen capillaries. She can now take the same meds without any bruising. So while you search for answers, maybe one of these supps can help strengthen the capillaries in the sinuses?
  7. Like
    pr40 reacted to sf_mom in nose bleeds   
    In the Lyme world regular bloody noses are associated with Bartonella.
  8. Like
    pr40 got a reaction from ibcdbwc in Sleep   
    want to second dcmom. if 14, he could take more. 3-6mg helps me (adult).
    5-htp was very useful when our dd had her worse insomnias.
  9. Like
    pr40 got a reaction from dasu in chronic fatigue syndrome -- study --   
    here is the study
    http://www.medicalnewstoday.com/articles/302451.php?page=2
    it's not directly relevant for pandas but often, when you have one autoimmune condition, you have another as well in some form. what's most interesting here is that they finally know which blood tests to do.
  10. Like
    pr40 got a reaction from MomWithOCDSon in schizophrenia is inflammation?   
    an another article relevant for PANDAS/Pans that suggest schizophrenia is caused by infammation in the brain
    http://www.webmd.com/schizophrenia/news/20151016/brain-inflammation-may-be-linked-to-schizophrenia
     
  11. Like
    pr40 reacted to kim in one autoimmune mechanism uncovered   
    PR40,
     
    When I read the article that you linked, I noticed this one as I started clicking around that site. Thanks for posting.
     
    http://www.medicalnewstoday.com/articles/152822.php?trendmd-shared=0
    Hydrangea Root Shows Promise In Treating Autoimmune Disorders
     
    An exciting new area in the field of autoimmune disease research is learning about the role of a particular immune system cell called the T helper 17 (Th17) which is genetically different from other types of CD4+ T cell like the Th1, Th2 and T-regulatory cells and appears to play a unique role in the part of the immune system that causes harm when it over-reacts.
  12. Like
    pr40 got a reaction from MomWithOCDSon in one autoimmune mechanism uncovered   
    this may be the one mechanism that makes immune reaction into autoimmune disaster. at any rate, quite promissing
    http://www.medicalnewstoday.com/articles/301016.php
     
     
  13. Like
    pr40 got a reaction from dasu in one autoimmune mechanism uncovered   
    this may be the one mechanism that makes immune reaction into autoimmune disaster. at any rate, quite promissing
    http://www.medicalnewstoday.com/articles/301016.php
     
     
  14. Like
    pr40 got a reaction from dasu in Injury, surgery and flares   
    when there is a immune reaction there can also be negative (auto-immune) effect on his system.
    being cut by glass should provoke an immune reaction.
    there is also some pscyhological effect of being wounded.
    all these should not last too long.
  15. Like
    pr40 got a reaction from MomWithOCDSon in more science on autoimmune conditions   
    it seems sci are very close to figuring out the enzyme and so one mechanism of autoimmune diseases.
    now, we just have to hope that this is the PANDAS mechanism. My understanding is that with this discovery, if it applies to PANDAS, we will be able to neutralize the symptoms of PANDAS -- too hopeful?
    Here is the article
    http://www.medicalnewstoday.com/articles/299719.php
     
  16. Like
    pr40 got a reaction from EAMom 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.
  17. Like
    pr40 reacted to qannie47 in Co-Morbid Discoveries with Pandas DS   
    Looking good folks...looking good! No anger. No opposition. Calm. Emotionally Regulated. Happy...the child is happy.
    It feels right too...if that makes any sense.?
  18. Like
    pr40 reacted to kim in vaccines mmr, varicella -- your experience   
    rowingmom,
     
    are you aware of the Merck lawsuit regarding the mumps portion of the MMR? They have been accused of adding rabbit antibodies to fake efficacy in the 90+ range. Any one who is testing titers should be aware of this and make their physician aware. Funny as they are forcing vaccination for education, they don't seem to think this is a threat and splash it all over the news. Here are a couple of links for that story.
     
    http://healthimpactnews.com/2014/judge-lawsuit-against-mercks-mmr-vaccine-fraud-to-continue/
    http://philadelphia.legalexaminer.com/fda-prescription-drugs/massive-fraud-in-merck-mmr-vaccine-testing/
     
    For anyone with a child due for a meningococcal vaccine, please be aware that the multidose vial of Menomune still contains 25 mcg mercury per dose. This is the vaccine for A/C/Y/W-135 strains. The newer B strain is a separate vaccine (which deserves a thread of it's own).
    Package inserts can be found here.
    http://www.immunize.org/packageinserts/pi_meningococcal.asp
     
    pr40,
     
    Have you already made a decision on the other vaccines that are on the schedule for 4-6 year olds? 5th dose DTaP, 4th dose polio and influenza? http://www.cdc.gov/vaccines/schedules/downloads/child/0-18yrs-child-combined-schedule.pdf
     
    If you do decide to get the MMR and varicella, you might want to think of doing them separately. There is a combo shot, but you can get a separate MMR and the varicella and space them which is the way I would personally go, if I were going to vax. I think (you will have to check this in the insert) that the amt of antigen in the stand alone varicella is lower than in the combo shot (ProQuad).
     
    Since there has been some discussion of HLA types here, I have a few things saved. The Hep B vaccine response in relationship to celiac caught my eye.
     
    http://www.ncbi.nlm.nih.gov/pubmed/18519462
    Gluten intake interferes with the humoral immune response to recombinant hepatitis B vaccine in patients with celiac disease.
     
    http://www.ncbi.nlm.nih.gov/pubmed/14572581 (excerpt)
    AIM:

    Human leucocyte antigen (HLA) system plays an essential role in the human immune system activity and the expression of some specific HLA antigens could modify the immune response to vaccinations. Celiac disease is included among the diseases associated to specific HLA profiles, principally characterized by the expression of the HLA DQ2 antigen
    Celiac disease has a strong association with a particular HLA genotype of DQ2

    http://www.ncbi.nlm.nih.gov/pubmed/17629515?dopt=Abstract&holding=npg
    A structural and immunological basis for the role of human leukocyte antigen DQ8 in celiac disease.
     
    Here is something on HLA-DR4
     
    http://www.smartvax.com/index.php?option=com_content&view=article&id=145:potential-genetic-marker-for-susceptibility-to-vaccine-injury
    HLA-DR4: A Potential Genetic Marker for Adverse Event Risk in Response to Vaccination
  19. Like
    pr40 reacted to Mayzoo in vaccines mmr, varicella -- your experience   
    Before making any decision, I would have titers drawn. Our kiddo's (13yrs old) titers are over 10 times higher than they should be and she had only one shot of each at 12 and 15 months of age. We have been on medication for almost 18 months to lower two of the four titers you are speaking about because her PANDAS immuno believes they are problematic. Getting titers done, you may find you are not in need of boosters after all.
  20. Like
    pr40 got a reaction from putting together the piece in Child in Psych ward need advice asap. please!   
    "I fully expect the behaviors to resurface once he is home."
    After reading his case history, I too belive this to be the case. BUT you do have something to work with.
    He seems to know how to control himself when he has to -- you could work on making that a habit. CBT might help in this case.
    If it were my children, I would use the possibility of going back to the hospital as a stick.
    I would also stay away from any psych drugs for as long as possible.
  21. Like
    pr40 got a reaction from 4Nikki in Child in Psych ward need advice asap. please!   
    "I fully expect the behaviors to resurface once he is home."
    After reading his case history, I too belive this to be the case. BUT you do have something to work with.
    He seems to know how to control himself when he has to -- you could work on making that a habit. CBT might help in this case.
    If it were my children, I would use the possibility of going back to the hospital as a stick.
    I would also stay away from any psych drugs for as long as possible.
  22. Like
    pr40 got a reaction from melanie in Vayarin ?   
    we did it for about sex months for both kids. At first I thought we saw some improvment but then I wasn't sure. After we stopped it, there was no change. We are on regular fish oil since. Because of great price difference, I prefer the latter -- we make sure that it is purified of mercury.
  23. Like
    pr40 got a reaction from nicklemama in New here   
    but strep is not the cause of pandas. pandas is an autoimmune condition. getting rid of infection is only one thing you need to do. many kids here are triggered by various triggers, hence PANS which is beginning to replace PANDAS diagnosis.
    for your theory to work, your kid would have to have only strep as a trigger.
  24. Like
    pr40 got a reaction from nicklemama in New here   
    if she was diagnosed with pandas, she should have been put on abx. that's standard protocol. ask why she wasn't.
    ask also, why dr thinks pandas will go away after tonsilectomy? (She may be in for a Nobel prize, if she knows what she is talking about)
    Melmix gives an example of improvement BUT in the example how can we tell if it is tonsilectomy or abx?
  25. Like
    pr40 got a reaction from Salinamom in Dr k Ivig protocol   
    if this doesn't work, you can contact NIH, sue sweedo, and ask for advice, or lehman at yale.
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