Dr_Rosario_Trifiletti
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Posts posted by Dr_Rosario_Trifiletti
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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.
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is it possible to dissect this a little
on page 702 it says
(420). Consistent with the small genome, M. pneumoniae lackssome enzymes that are associated with virulence of other bacteria,
such as superoxide dismutase and catalase. Hydrogen
peroxide production in M. pneumoniae occurs as a result of a
flavin-terminated electron transport chain (420). Hydrogen
peroxide has been known to be important as a virulence factor
in M. pneumoniae since Somerson et al. showed it to be the
molecule that confers hemolytic activity (385). The ultrastructural
effects of peroxide on host cells such as erythrocytes
include loss of reduced glutathione, denaturation of hemoglobin,
peroxidation of erythrocyte lipids, and eventually lysis of
the cells. Almagor et al. (8) suggested that superoxide anion
produced by M. pneumoniae acts to inhibit catalase in host
cells, thereby reducing the enzymatic breakdown of peroxides
produced endogenously and by the mycoplasma, rendering the
host cell more susceptible to oxidative damage. M. pneumoniae
hemadsorption and lysis of guinea pig erythrocytes, which are
low in endogenous catalase, are also mediated by peroxide
(420). This property was adapted for use as a diagnostic test to
presumptively distinguish M. pneumoniae from other commensal
mycoplasmas that are commonly found in the human respiratory
tract, which do not produce hydrogen peroxide and
therefore do not hemadsorb in this manner.
Host cell lactoferrin acquisition by M. pneumoniae is
yet another possible means by which local injury may occur,
through generation of highly reactive hydroxy radicals resulting
from the introduction of iron complexes in a microenvironment
rendered locally acidic by cellular metabolism that
also includes hydrogen peroxide and superoxide anion (419).
i've thought about food grade hydrogen peroxide...to add oxygen to the body.....
would that only feed it?
also is it saying iron is bad and should not be taken
my concern is that my sons onset was a year ago, so i didn't catch it quick
on page 701 it says.
Rottem (355) has summarized current knowledge
concerning the features that enable M. penetrans, a mycoplasma
of uncertain pathological significance that has been
isolated from urine specimens from human immunodeficiency
virus-infected persons, and M. fermentans to invade host cells,
some of which may be relevant to enhance understanding of
similar events that may occur with M. pneumoniae. Dallo and
Baseman (87) recently described the ability of M. pneumoniae
to survive, synthesize DNA, and undergo cell replication in
artificial cell culture systems over a 6-month period.
dose that mean it changed his dna or that it could survive in artifical dna for up to 6 months?
and what would be artifical dna???
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
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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
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I'm confused. Mystery Dx's format is to tell the story of diagnosis of just 1 patient...so how would that tell multiple stories? It does define and educate on the "mystery condition" so that would be good. 20/20, on the other hand could explore the condition through multiple stories, as that fits their format.
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
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Just a thought. The PANDAS acronym is now "out" and getting publicity (although some not so good). Wondering if perhaps there is another way to use it. For example A.S. for And Syndrome?
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
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Just a thought. The PANDAS acronym is now "out" and getting publicity (although some not so good). Wondering if perhaps there is another way to use it. For example A.S. for And Syndrome?
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
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Don't know if it is a physical, ocd, or anxiety thing. My dd had daily stomach aches post strep for 9 mos. We did gi testing- came up with nothing. The stomach aches went away once we did full dose zithromax (counter intuitive right?)
I wish I had seen this in black and white when we were pursuing only the GI route- waste of time...
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
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Hi all!
I have emails into Dr. K and Dr. C regarding these results. Go ahead and chime in.
Ds11 PANDAS (in hindsight, an early onset case) IVIG#1 Oct 09, IVIG #2 scheduled for This Wed/Thurs w/ Dr. K.
Dd15 PANDAS adol variant dx Dec09
Now for the titer results. I insisted that the ASO/ADB titers be taken on each family member back in Dec. despite negative throat cultures. Our son started taking high dose Augmentin post IVIG #1 and has been on that since Oct. The other four of us had a month of high dose Augmentin starting in Dec. Actually, dd15 had about 6 weeks.
Help me out doc & others:
pandasDS11: preIVIG#1: 780/1360 12/09: 378/580 3/09: 378/5440
pandasDD15 12/09: 752/5400 3/09: 756/ (probably sent to the moon it's so high--it was the first sent in! Pending, I'm told.)
DD13 12/09: neg/188 3/09: neg/960
Mom 12/09: 756/1920 3/09: 756/5440 (has psoriasis. Could this be the problem??)
Dad 12/09: 189/1920 3/09: 189/5440
DD15 symptoms went away on abx. They have started to creep back in. Dr. K put her back on Augmentin.
I am aware the ADB lags the ASO in rise & fall. Will we be bringing our son back home to a strep factory again? Does our son's results indicate that Augmentin is not cutting it w/ this strain of strep??
I need insight.
Dawn
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!
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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.
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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
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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
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Interestingly, bad mycoplasma infections seem to occur in every 5-7 year epidemics .... almost predictable.
More on this soon,
Dr. T
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Cut and paste the whole thing that is in your browser. Then it's gets abbreviated when you post it on here
http://abcnews.go.com/2020/MindMoodNews/pa...ory?id=10073035
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
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This is an exciting post to wake up to! The fact that a big company now has officially heard the word PANDAS and IVIG is great!
Awesome work!
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
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I know many members here usually only read the PANDAS forum, but the TS/tics forum is filled with anecdotal evidence that verifies that, altho the genetics are likely a big part of Tourette Syndrome, it is the environment, both internal and external and yes, what gets put into the inside from the outside, that seems to determine who manifests the TS symptoms and how they manifest
We have learned such a lot since we started keeping that journal years ago to document what triggers my son's tics, OCD, Crohn's and other stuff (remember he has the whole caboodle of disorders in the TS spectrum )
there are a lot of question marks tho for me...like why did my younger son manifest all this, and older one not.
Older one appears to have no neuro or health problems...younger one has a loooong list of them!
The problem with the other DrT is that he has just likely never really looked into the very clear evidence that there is more to TS than just the switching on of a gene, or genes. I encountered that with so many physicians, and even other people with TS, that it doesnt even surprise me anymore
personally, where I have no doubt about the infection connection in many many cases of TS, yet there are also other things that seem to flip that switch, or cause the immune system to go "wrong". It really has been an amazing thing to watch people pass thru the TS/tics forum here and see how things resolve for their kids once they get to the root of things. The diversity is astonishing. It has left me very open minded.
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
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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!
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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
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well put Chemar!!
Deanna
No it's not me.
Does anybody actually read the New York Times any more?
Dr. T
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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.
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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
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
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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
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
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No worries. I'm sure you are a hero to the Johnson family and many of us on here. Keep up the good work. I'd love to know if you and Dr. K have compared notes and see if each of you could gain from the others knowledge and experience.
Alex
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
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In my view - PANDAS is more common that Autism
Do you know how many Autism Websites /Foundations etc there are out there?
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
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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
Everything you ever wanted to know about Mycoplasma
in PANS / PANDAS (Lyme included)
Posted