Dr_Rosario_Trifiletti

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 ....

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.

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

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

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

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

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

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

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!

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.

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

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

Interestingly, bad mycoplasma infections seem to occur in every 5-7 year epidemics .... almost predictable. More on this soon, Dr. T

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