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Everything posted by Dr_Rosario_Trifiletti

  1. Very important observation! Many kids with PITANDS have unexplained low ferritin levels! Low ferritin levels usually serve as a red flag to doctors for iron deficiency. In that case --- iron deficiency >> low ferritin levels. But, these kids are not iron deficient! - there are many markers of iron deficiency - low MCV, low hematocrit, high total iron binding capacity ... these kids are not iron deficient I have another idea -- what if the low ferritin is not a consequence of iron deficiency, but the primary problem? In that case low ferritin >> relative iron overload --- i.e. iron toxicity Where does iron toxicity manifest in the brain ---- surprise, surprise - the basal ganglia So giving iron here may be the wrong thing to do - patients may get worse! Another clue Low ferritin levels, whatever the cause, are invariably related to RESTLESS LEGS SYNDROME. The incidence of RLS, the most common movement disorder in adults (and maybe children too) is much higher in children with tics/Tourette's Read about restless legs syndrome here http://en.wikipedia.org/wiki/Restless_legs_syndrome Does this fit at all with your child ....
  2. I've known Dr. Legido for many years. He is Catalan, from the Barcelona region of Spain., speaks perfect English. He's very smart (many papers published) and very kind. I think you will like him very much as a doctor and person. I'm not sure what his views on PANDAS are. But if you do see him and he has any questions about PANDAS, please tell him that his old friend Dr. Trifiletti said hello and I would be happy to help him with any questions he might have.
  3. I said I wouldn't post but I felt I had to for sake of safety NEVER GIVE YOUR CHILD HYDROGEN PEROXIDE NEVER NEVER This is not the way to treat mycoplasma! email me Fixit ... D r. T
  4. Disorders of the thyroid, and endocrine disorders in general (notable exception is Type 1 diabetes) are usually fairly slow moving clinically. The symptoms generally creep up on you and when diagnosed have been going on for a long time. Thyroid levels certainly affect one's moods and behavior. In fact, The syllable "Thy" usually refers to mood (dys-thy-mia, cyclo-thy-mia, etc). In general - very general- terms : low thyroid is associated with depression, high thyroid is associated excitation, mania I usually measure a thyroid panel (T3, T4, TSH) in every new patient and ask carefully for a family history of thyroid disorders. I haven't seen an obvious association of thyroid disorders with PANDAS but I check anyway because of the potential of such an interaction and because thyroid disorders are generally EASILY TREATABLE. I would also point out that chronic use of SSRI meds such as prozac, zoloft, luvox, etc are known to be associated with apparent hypothyroidism. So if your child is or has recently been on any of those for >2-3 months, I would definitely consider checking a thyroid hormone panel. see http://www.ncbi.nlm.nih.gov/pubmed/7779834 Dr. T
  5. If I could choose (and I can't) I would present 4 stories - 15 min each - with 4 or so specialists adding commentaries, along with parents 1. An otherwise healthy child who gets a sudden onset of a tic (like Lauren) 2. An otherwise healthy child who develops OCD 3. A child with autism who develops a marked worsening of symptoms 4. A child who develops severe PANDAS and the "exorcist syndrome" I think this would really show the range of this condition. Keep the "does PANDAS exist" controversy out of it .... By the end of the show, that should be self-evident Dr. T
  6. Zazuk2010 You are absolutely right. PANDAS has 100x the name recognition of PITANDS. We have to find a way to not abandon PANDAS .... Maybe just PANDAS-PITANDS or "PANDAS-like ILLNESSES" Also, this classification is really more for doctors, ICD9 codes and the like. And to organize one's thoughts. I thought this would be a good time to talk about PITANDS criteria with the new forum name this week .... It's much better to "ThinkPANDAS" even if you don't "GotStrep" LOL Dr. T
  7. Zazuk2010 You are absolutely right. PANDAS has 100x the name recognition of PITANDS. We have to find a way to not abandon PANDAS .... Maybe just PANDAS-PITANDS or "PANDAS-like ILLNESSES" Also, this classification is really more for doctors, ICD9 codes and the like. And to organize one's thoughts. I thought this would be a good time to talk about PITANDS criteria with the new forum name this week .... It's much better to "ThinkPANDAS" even if you don't "GotStrep" LOL Dr. T
  8. I spent all last year asking about stomach aches. From what I figured out, lots of PANDAS kids seem to have migraine type things going on. We finally decided my son had abdominal migraines. Once he started taking magnesium supplements they decreased in frequency and severity. He will still get them (just not as severe) if he gets dehydrated, too hungry, or spends too much time in front of a movie or TV screen, especially if it is a fast action movie and he sits too close. If I catch it quick a dose of ibuprofen will do the trick. If not, I usually give him a dose of magnesium, ibuprofen and he takes an epsom salt bath with lavendar, rosemary and peppermint essential oils. Usually that will solve it and we can stop it from getting to the point where he throws up. He used to get them almost weekly, now it is more like one every other month. I had no idea this was linked to PANDAS either until I started reading past posts and soooo many people talk about it. I think the official name is Cyclical Vomiting and once I googled it I knew that I had found what he has. I have a number of cases of PANDAS presenting exclusively (at least initially) as cyclic vomiting. Gotta write them up! Dr. T
  9. This is an amazing and unusual case for the disparity between ASO and anti-DNAase B. Although these are the highest anti-DNAase B values I've ever seen, remember, most labs report what I call "TILT" values (from the old slot machines), i.e >1:2720 or something like that ... I'm guessing that this is not Group A strep, perhaps C or G ... (C and G have SO but levels of DB may be relatively higher) There is also something called anti-streptolysin S which I will not abbreviate for obvious reasons. LOL Dr. T P.S. I'd be happy to talk with you further offline. PM me with contact information if you wish!
  10. Proposal for a working definition and classification of PITANDS Working definition of PITANDS 1. First onset of symptoms in Pediatric age group 0-18 years 2. Acute or persistent onset of neuropsychiatric symptoms, characteristically, but not limited to tics or OCD 3. Usually, but not always, in association with an acute or persistent identified infectious triggers (GABHS, mycoplasma, others) 4. Rapid improvement of symptoms with anti-infective agents, usually antibiotics Notice these criteria are much broader than the Swedo PANDAS criteria, still verifiable, but still including most children discussed in this forum. Notice that the hardest to verify part, the "autoimmune" part, is left out of the criteria (though it always behind the scenes) SUBGROUPS Type 1 PITANDS - PITANDS in an apparently immunocompetent host A. PANDAS (exclusively streptococcal trigger) - more common in younger children Swedo-type (classical PANDAS) PANDAS variants OR atypical PANDAS(see PAVONE ET AL, 2006) B. PANDAM (exclusively mycoplasma trigger) C. PANDAF (exclusively flagellated bacteria trigger) - covers Lyme and Lyme-like cases - maybe be the most common non-PANDAX group D. PANDAX (multiple infectious triggers) - many of our children fall into this category - more common in older children E. Idiopathic anti-INFECTIVE-responsive neuropsychiatric disorder, not otherwise specified (PITANDS-NOS) - the wastebasket group Type 2 PITANDS - PITANDS in an congenitally immunocompromised host This group typically shows: 1. Lack of serological response to known triggers despite independent documentation of infection (includes culture (+) strep but antibody negative group) 2. Often, but not always, unusual response to vaccines including lack of serological response to vaccines 3. Often, but not always, a history of very frequent infections, including strep, before age 2 A. With humoral (B-cell) immunodeficiency - includes CVID, subclass deficiency, HyperIgE/Job and HyperIgM (including female type) B. With cell-mediated (T-cell) immunodeficiency Note: 1. Children may start off as PANDAS, PANDAM or PANDAF but as they get older and persistent infections pile up, most end up as PANDAX 2. Children with Type 1 PITANDS may start off immunocompetent but then become progressively (and usually selectively) immunocompromised. This is different that the Type 2 group where the children are immunocompromised very early on.
  11. We have recently found almost all children with PANDAS-like illnesses harbor anti-flagellin (p41 on Lyme Western blots) antibodies, indicating chronic infection with flagellated bacteria. This association is very strong, much higher than the association with either strep or mycoplasma. This could, in fact, be the infection that sets the stage for trouble, even before strep arrives on the scene. There are many gut active bacteria - including Helicobacter, Campylobacter, etc - that are flagellated. This is a natural explanation for association of PANDAS with a chronic GI infections - the question is which one(s)? This is a fruitful area for clinical exploration. Did anyone have a more specific diagnosis of their gut issues - i.e. actual organisms cultured. Dr. T
  12. This is very detailed, but might be of interest to some http://www.ncbi.nlm.nih.gov/pmc/articles/P...pdf/0068-03.pdf One interesting thing that this article states is that mycoplasma outbreaks peak every 5-7 years. I certainly sense there is a difference from one year to another with respect to PANDAS-like illnesses. I wonder if this has anything to do with it
  13. Interestingly, bad mycoplasma infections seem to occur in every 5-7 year epidemics .... almost predictable. More on this soon, Dr. T
  14. I missed it, working really long hours these days ... will try to look at it soon and get back to you. We need a similar 1 hr show - maybe FRONTLINE on PBS - devoted to PANDAS .... Dr. T
  15. I can tell you right now that undoubtedly PANDAS will be the #1 use for IVIG in all of child neurology, and maybe high on the list of all pediatric diseases There are quite a few other diseases in child neurology where IVIG is indicated, but they are rare compared to PANDAS Why would Baxter not want to fund this, at least on a pilot scale ? ... the potential benefits to them could be enormous. By the way, it's hard to get FDA approval and insurance coverage for treatment of a disease that officially "doesn't exist"! That's the first mountain to climb. But I'm very excited by this. Dr. T
  16. I agree. Tourette's is a very complex disease. By no means are infections the only external factor. Potentially anything - nutrition, allergies, stress, etc. that somehow leads to dopamine excess in the basal ganglia results in tics. A multi-factorial disease if I ever saw one. I'm sure that King and Leckman would agree with this, I know both of them well. Dr. T
  17. This is what I meant by the allusion to Enrico Fermi http://en.wikipedia.org/wiki/Fermi_paradox which is very interesting in its own right!
  18. If Tourette Syndrome is totally genetic - to paraphrase Enrico Fermi With respect to the genes Where are they? Tourette syndrome is something that is generally obvious to tell if one does or does not have. It's a common disease - 0.1-1% of the population has it There are many families with multiple affected members Autism is much harder to diagnose with certainty and yet 150+ genes have been found Where are the Tourette genes? Here is the reason, I think, Tourette genes have not been found - genetics are only PART of the story of Tourettes Remember Disease = Genes + Environment There are powerful epi-genetic (i.e. external) factors at play in Tourette's - many studies have suggested this. The presence of a powerful environmental factor confounds linkage analysis --- makes it very hard to find genes - same problem in Parkinson's disease - only a few genes found - accounting for <10% of the cases What might the "environmental factor be" --- strep, mycoplasma, others -- they are driving this illness, genes to a lesser extent. So where are the genes - in fact the "other Dr. T's" statement that "Tourette's is all genetic" is not only incorrect, but its falsity is in fact a powerful argument for PANDAS! The "real" Dr. T
  19. No it's not me. Does anybody actually read the New York Times any more? Dr. T
  20. I think you are all hitting on the basic problem with all vaccines: 1. The vast majority of kids do fine with vaccines. Vaccines have done a huge amount to reduce disease in the last century. Smallpox is history. In the 1950's Jonas Salk was a national hero and people couldn't wait to give their children the polio vaccine. How the world has changed! 2. If you vaccinate enough children you will produce herd immunity, which means the chance of an unvaccinated individual encountering the infectious agent is very low. So, to a certain point, a low level of unvaccinated children (or vaccine failures) can be tolerated in the population at large. BUT I think it is clear A small percentage of children do not do well with vaccines. Perhaps they legitimately ought not to be vaccinated. I'm starting to think that some children with PANDAS might be in that group The problem with current policy is that we vaccinate pretty much all children with 20+ doses of various vaccines by the age of 18 months (most before 6 months) I view vaccines a little like concussions to the immune system. They are punches to the immune system, which are intended to make it tougher. But it takes the body time to recover. Too many too close together, just like concussions, can be a major problem. We CAN'T STOP doing them in general, we just have to be more intelligent with how we do them. The big challenge to medicine in this area is then to find a way to "pick out" those children who are much more likely to have vaccine reactions from those that will not. This has to be done at the time of birth, since vaccines start then. Further complicating matters is the fact that the newborn (born sterile) has a very different immune system from the older child. This is going to take a few decades, at least, to figure out.
  21. not sure who the "self proclaimed experts" are that you are referring to but that comment sounds a bit like the "expert" tourette syndrome doctors who told me my son would never be ok if I didnt give him the strong antipsychotic drugs and SSRIs for his TS/OCD and let's not forget that ACN/Latitudes has always been about promoting alternative and complementary treatments thank goodness for that, and that I found latitudes magazine and then these forums, or my son would likely still have been in crisis! I found the stepping stones here to help bring about meaningful change in his condition, with the help of remarkable physicians who were open minded to the incredible healing that many alternative and complementary treatments can bring about that obviously doesnt negate the essential role of antibiotics and other medications, and that we all agree they are often urgently needed in crisis situations, and save lives literally and figuratively, nor of how important they are for those dealing with PANDAS....... but still, that remark was a bit insensitive considering the purpose of ACN/Latitudes IMHO and especially too as the forums here have always been about members sharing their experiences, information and support for one another, not "experts" I apologize. I forgot where I was. Eppur si muove. Dr. T
  22. Dr.T-- Have you considered establishing an online journal? This would (perhaps) be readily accessible to all-- Thank you again for your work on this-- I would love to. Does anyone know how to get started? Just trying to see if someone can give me some pointers. I'm not talking about a blog here ... more like a magazine-style medical journal, but online and readily accessible. Another idea might be a scholarly Wiki, sort of like ScholarPedia. That's easy to start. But need peer review, editorial board, etc for purposes of credibility. Dr. T
  23. Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement. Dr. T Dr. T. Why wait until May? We know Dr. K is fairly quick to recommend IVIG. You prefer to try other avenues before proceeding down that path. You and he are probably the leading voices on PANDAS treatment. You care deeply about the patients which is so admirable. With that in mind, it doesn't make sense to delay a meeting of the minds when the two of you are giving confliciting advice. At a minimum you could get a head start on what will be discussed at the think tank. You are right. It's not fair to all of you to wait until May. I also don't think we are giving conflicting advice, just seeing a different patient population and for different lengths of follow-up. There is no "right way" to treat this disease (at least not yet) and I approach each case as individually and analytically as possible. I will try to contact Dr. K and try to set up a discussion with him. If he is in agreement, I will report our consensus to you right here .... Dr. T
  24. But, has this served the cause of autism research and treatment well? Personally, I don't think it has. Trying to wade through all of that to get at good information (precious little of that!) is quite daunting and leaves parents and patients not quite knowing where to turn or who to believe. I agree Peglem. A couple is good. A thousand is too many. I predict that websites, books, foundations, etc will soon be multiplying like - ugggh - bacteria. I think it would be a shame for this area to devolve into a network of self-proclaimed experts pushing alternative treatments to desperate parents looking for a miracle cure. PANDAS/PITANDS is a medical condition that I think is rapidly becoming understandable and subject to testable hypotheses and evidence-based conclusion. Autism is 20 years ahead of us in name recognition but 20 years behind in scientific understanding! This is not to say that good nutrition, dietary strategies, and other complimentary approaches don't help, but not in the powerful and direct way the proper antibiotic will Dr. T
  25. Does anyone out there have any connections in the publishing, especially scientific publishing world? The idea here is that this would be a mechanism for publication of peer-reviewed clinical and research papers that would otherwise be difficult to publish. Dr. T
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