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TOURETTE'S SYNDROME AND PANDAS
Pediatric
Autoimmune
Neuropsychiatric
Disorder
Associated with
Streptococcal infections
One of the first questions asked by many persons new to Tourette's syndrome is often
in reference to the hypothesized connection between strep infections and Tourette
Syndrome/obsessive-compulsive disorder. This
is an area where a great deal of misinformation is to be found, and some
laypersons and physicians have gotten ahead of the information that is supported
by research. Unfortunately, less than accurate information about PANDAS is
to be found all over the internet, in the media, and among physicians: it can be very confusing to persons who
are just beginning to sort out life with Tourette's syndrome.
The (as yet unproven) PANDAS hypothesis is that antibodies to group A ß-hemolytic streptococcal infection (GABHS) attack the regions of the brain which affect movement disorders, causing a sudden exacerbation in TS/OCD symptoms. It is not so much the question of whether infections may induce tic exacerbations in some children that is in question: ATIS (Abrupt onset of Tics Induced by a Streptococcal infection) may be a factor for some children with TS/OCD, but does not seem to be an issue for the majority of persons with Tourette's syndrome. Furthermore, some may be confused and mistakenly believe that strep is the issue, when in fact, it seems to be an autoimmunity issue involving the antibodies to strep. What triggers the antibodies to attack the brain is the subject of current research, and much of what is hypothesized about PANDAS is still changing as the research evolves.
Parents of children newly-diagnosed with Tourette's disorder are encouraged to approach everything they find online about PANDAS with caution, as the research is still evolving and PANDAS does not affect the majority of persons with Tourette's syndrome. There are many untested, unproven, and dangerous procedures (such as IVIG and the prophylactic use of antibiotics) being employed, in some situations, outside of medical consensus and protocol, so newcomers might want to research the guidelines of the Tourette Syndrome Association Medical Advisory Board with respect to PANDAS.
Updated commentary on recent PANDAS articles.
Recent
Research
Pediatrics. 2004 Jun;113(6):e578-85.
Prospective longitudinal study of children with tic disorders and/or
obsessive-compulsive disorder: relationship of symptom exacerbations to
newly acquired streptococcal infections. CONCLUSIONS: The results suggest no clear relationship between new
GABHS infections and symptom exacerbations in an unselected group of
patients with TS and/or OCD.
J Clin Psychiatry. 2004 Apr;65(4):537-42.
Lack of effect of intravenous immunoglobulins on tics: a double-blind
placebo-controlled study. CONCLUSION: Based on the present results, IVIG cannot be recommended in
tic disorders.
Canadian
Health Report
"Meantime, a second study published in today's edition of Pediatrics
warns there's not enough evidence to prove a strep infection can
trigger tics or psychiatric problems in children.
A potential link surfaced several years ago, when researchers from the
U.S. National Institute of Mental Health discovered that, in some
children who had an abrupt onset of obsessive-compulsive disorders or
Tourette's syndrome, their problems appeared soon after an infection
with group A streptococcus.
Some doctors suspect antibodies a child makes against a strep infection
may attack healthy cells in the part of the brain that controls motor
movements. But Dr. Roger Kurlan, a neurologist at the University of
Rochester's Strong Memorial Hospital, says strep infections are so
common, it's rare for a child never to have had at least one.
Kurlan, co-author of the Pediatrics report, said in a statement that
tics "wax and wane.
'Often times patients come in to the doctor's office soon after their
symptoms have peaked, so it proves nothing to show that a child's
symptoms subsided after they saw a doctor and were treated with
antibiotics. It's quite possible that doctors could give such children
a green-bean diet and the children would get better.' "
J Psychosom Res. 2003 Jul;55(1):31-9.
PANDAS: a commentary. Singer HS, Loiselle C.
"Conclusion
The originators of the PANDAS diagnosis had the laudable goal of
defining a clinical syndrome in which a subset of individuals with
diagnoses of tic disorders and/or OCD could be subcategorized based on
the induction of symptoms after a GABHS infection. This concept has
generated broad interest from divergent groups and caused many
physicians to become polarized on opposing sides of the issue. If true,
identification of factors that convey susceptibility or render the host
less susceptible would be a major advance. Our goal in this manuscript
was not to confirm or refute the diagnosis, but rather to discuss the
numerous challenges that persist. As noted, despite claims of a
distinct clinical syndrome, multiple areas of concern remain, involving
the current diagnostic criteria and the presumed mechanism of pathogenesis. We suggest that confirmation will require
careful
longitudinal studies of sufficient size to establish significance. Additionally, until further clarification is available, treatment
should continue to focus on the use of standard approaches to control
symptoms. Although there is the risk of delaying potential advances,
there is a longstanding rationale to support the concept of "putting the horse before the cart." Along with the scientific
community, we
anxiously await the result of longitudinal case-controlled studies now
in progress.
[author note: Back to the introduction]
Advocates for the PANDAS disorder emphasize its clinical and laboratory
similarities to Sydenham's chorea (SC), a manifestation of rheumatic
fever (RF) [2]. In contrast, those who question the existence of this
condition cite concerns with its diagnostic criteria and the lack of
evidence confirming an association between group A-hemolytic
streptococcal (GABHS) infection and tics/OCD [3].
Despite the seemingly strong supportive evidence for autoimmunity in
SC, the reader should recognize that levels of autoantibodies against
brain are present in healthy subjects [2, 20, 23 and 24] and that the
presence of an antibody does not necessarily imply a functional effect.
The expanding list of proposed environmental factors that may alter the
presentation or exacerbation of tics includes low birth weight,
nonspecific maternal emotional stress, severity of maternal nausea and
vomiting during pregnancy, pre- or postnatal exposure to drugs or
toxins, hyperthermia, allergens, and infections [34]. The recognition
that infection, fever, and medications can exacerbate tics has important implications for establishing strict definitional
criteria
for PANDAS. More specifically, we contend that, until other clinical or
laboratory markers are available to distinguish tic disorders from
PANDAS, the presence of tics before any infection-related exacerbation
should exclude the diagnosis of a primary post-infectious etiology,
i.e., PANDAS.
Challenges for PANDAS
The existence of PANDAS is not free of controversy [3]. A variety of
diagnostic shortcomings have been identified, as has the lack of other
classical features often associated with RF. Despite these limitations,
a major deficiency is the absence of a prospective epidemiologic study
confirming that an antecedent GABHS infection is associated with either
the onset or exacerbation of tic disorders (or OCD). Two NIH-funded
multicenter studies, designed to address these critical issues, are
currently in progress.
Although patients with tic disorders generally have a slow, more
gradually evolving pattern of tics, abrupt changes are not uncommon. In
a study of 80 consecutive unselected children with tic disorders, a
structured clinical interview found that 42 of 80 (53%) had the sudden
explosive onset or worsening of their tic symptoms [56]. This same
study also raised the issue of parent bias being a confounding factor;
78% of informants who described an offspring with abrupt onset of tics
induced by a streptococcal infection were knowledgeable about PANDAS,
compared with only 21% in the group that denied any association.
Additional difficulties in confirming a temporal association with a
GABHS infection include a positive throat culture in an asymptomatic
carrier and the misinterpretation of a single ASO or antiDNAse-B
determination. Too often, clinicians fail to recall the warning of
Swedo et al. [1] that "positive antistreptococcal titers obtained at
the time of a single exacerbation are not sufficient to prove that a
child has PANDAS." Longitudinal laboratory data, rather than just an
isolated throat culture or antistreptococcal antibody titer, are
necessary to demonstrate that a GABHS infection is associated with
PANDAS, i.e., rising titers with symptom exacerbation and falling
titers with symptom remission.
Other challenges
Several clinical studies are occasionally cited as supporting evidence
for PANDAS, but the data actually have little relevance. For example,
based on the postulated role of GABHS in the pathogenesis of PANDAS,
researchers have sought to identify whether individuals with a tic
disorder have increased levels of streptococcal antibodies.
In each study, however, there was no correlation between levels of
antistreptococcal titers and clinical symptoms."
Prospective Identification and Treatment of
Children With Pediatric Autoimmune
Neuropsychiatric Disorder Associated With Group
A Streptococcal Infection (PANDAS)
This study was not blinded or placebo-controlled.
WARNING !!! From
the NIMH, developed by a sub-committee of the TSA Scientific Advisory Board in collaboration with TSA and NIMH
staff:
Plasma Exchange and Intravenous Immunoglobulin Lack Proven Benefit and Carry Risk for Children with PANDAS, Tourette´s Syndrome, or OCD
A journal report suggesting that prior reports of an
association between strep and tic disorders or OCD may have been confounded by
the presence of ADHD.
Preliminary
Findings of Antistreptococcal Antibody Titers and Basal Ganglia Volumes in Tic,
Obsessive-compulsive, and Attention-Deficit/Hyperactivity Disorders
Excerpts from the Tourette Syndrome Association, Inc., Medical Letter, 1997 Summary of the Recent Literature, PANDAS AND PITANDS, by John Walkup, M.D., Editorial
Based on what we know
about strep throat, what should clinicians do when they see a youngster with
an acute onset of a tic disorder or OCD?
It is prudent to have the patient see a pediatrician and undergo an evaluation
for infection (throat culture). Given the duration of strep infections
and the time tables for antibody response and subsequent development of
post-streptococcal syndromes noted above, it is not at all clear what
information a single Antistreptolysin O and AntiDNAase B titer test provides
in the evaluation and management of tics/OCD. It is certainly clear that
one does not treat a child with antibiotics for an abrupt onset of tics/OCD in
the absence of evidence of an acute strep throat. It is also clear that
one does not treat elevated strep antibody titers in the absence of an acute
infection.
...
At this point, is the field clear about the advisability of these
treatments?
... Although the idea that TS/OCD may have an autoimmune etiology is
controversial, for many it is the proposed treatments that raise the most
concern. Scientists are quite comfortable studying and debating whether
TS/OCD might have an autoimmune etiology. Of greater concern is that
these new treatments have been proposed without properly controlled trials,
and that many clinicians are employing them without adequate justification.
... The major problem with antibiotic prophylaxis is the absence of either
controlled trials, or a clearly developed scientific indication in tics/OCD.
Other problems include a lack of information about both antibiotic dosing and
the frequency of breakthrough infections. Until we have data showing the
effectiveness of antibiotic prophylaxis, dosing and management of breakthrough
infections with antibiotic prophylaxis is a dubious intervention. In
spite of the lack of information supporting the use of antibiotic prophylaxis,
some clinicians and families will still view this intervention as causing
little harm. Scientists are concerned about the overuse of antibiotics
that can lead to the development of resistant strains of bacteria.
Although GABHS does not appear to have mutated or become resistant to
penicillin, the overuse of antibiotics for strep could lead to the development
of resistant strains of other bacteria.
What is the bottom line?
Most new and exciting scientific theories often are accompanied by
considerable controversy. Opinions and feelings run strong on both sides
of this one. The most serious problem, however, is just how far the
field has gone in terms of treatment without evidence from controlled clinical
trials, and also without the properly controlled studies confirming the
association of GABHS and the development of tics/OCD symptoms. We are
hopeful that prospective studies and randomized clinical trials are being
developed and will be implemented. In the meantime, rather than rush to
treatment, a more skeptical and considered approach is recommended.
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome Tourette
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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