PANDAS syndromes are
Frequently asked questions about PANDAS ( Autistic disorder & Obsessive
Compulsive disorder). 13 answers
Q. Is there a test for PANDAS?
A. No. The diagnosis of PANDAS is a clinical diagnosis, which means
that there are no lab tests that can diagnose PANDAS. Instead clinicians use 5
diagnostic criteria for the diagnosis of PANDAS (see below). At the present time
the clinical features of the illness are the only means of determining whether
or not a child might have PANDAS.
Q. What are the diagnostic criteria for PANDAS?
A. They are:
- Presence of Obsessive-compulsive disorder and/or a tic disorder
- Pediatric onset of symptoms (age 3 years to puberty)
- Episodic course of symptom severity
- Association with group A Beta-hemolytic streptococcal infection (a
positive throat culture for strep. or history of Scarlet Fever.)
- Association with neurological abnormalities (motoric hyperactivity, or
adventitious movements, such as choreiform movements)
Q. What is an episodic course of symptoms?
A. Children with PANDAS seem to have dramatic ups and downs in their
OCD and/or tic severity. Tics or OCD which are almost always present at a
relatively consistent level do not represent an episodic course. Many kids with
OCD or tics have good days and bad days, or even good weeks and bad weeks.
However, patients with PANDAS have a very sudden onset or worsening of their
symptoms, followed by a slow, gradual improvement. If they get another strep.
infection, their symptoms suddenly worsen again. The increased symptom severity
usually persists for at least several weeks, but may last for several months or
longer. The tics or OCD then seem to gradually fade away, and the children often
enjoy a few weeks or several months without problems. When they have another
strep. throat infection the tics or OCD return just as suddenly and
dramatically as they did previously.
Q. Are there any other symptoms
associated with PANDAS episodes?
A. Yes. Children with PANDAS often experience one or more of
the following symptoms in conjunction with their OCD and/or tics:
- ADHD symptoms (hyperactivity, inattention, fidgety)
- Separation anxiety (Child is “clingy” and has difficulty separating from
his/her caregivers. For example, the child may not want to be in a different
room in the house from his/her parents.)
- Mood changes (irritability, sadness, emotional lability)
- Sleep disturbance
- Night- time bed wetting and/or day- time urinary frequency
- Fine/gross motor changes (e.g. changes in handwriting)
- Joint pains
Q. My child has had strep. throat before, and he has
tics and/or OCD. Does that mean he has PANDAS?
A. No. Many children have OCD and/or tics, and almost all school aged
children get strep. throat at some point in their lives. In fact, the average
grade-school student will have 2 – 3 strep. throat infections each year. PANDAS
is considered when there is a very close relationship between the abrupt onset
or worsening or OCD and/or tics, and a preceding strep. infection. If strep. is
found in conjunction with two or three episodes of OCD/tics, then it may be that
the child has PANDAS.
Q. Could an adult have PANDAS?
A.No. By definition, PANDAS is a pediatric disorder. It is possible
that adolescents and adults may have immune mediated OCD, but this is not known.
The research studies at the NIMH are restricted to children
Q.My child has PANDAS. Should he have his tonsils
A. The NIH does not recommend tonsillectomies for children with PANDAS,
as there is no evidence that they are helpful. If a tonsillectomy is
recommended because of frequent episodes of tonsillitis, it would be
useful to discuss the pros and cons of the procedure with your
child’s doctor, because of the role that the tonsils play in
fighting strep. infections.
exactly is an anti-streptococcal antibody titer?
A. The anti-streptococcal antibody titer determines whether there is
immunologic evidence of a previous strep. infection. Two different
strep. tests are commercially available: the antistrepolysin O (ASO)
titer, which rises 3-6 weeks after a strep. infection, and the
antistreptococcal DNAase B (AntiDNAse-B) titer, which rises 6-8
weeks after a strep. infection.
does an elevated anti-streptococcal antibody titer mean? Is this bad
for my child?
A. An elevated anti-strep. titer (such as ASO or AntiDNAse-B) means the
child has had a strep. infection sometime within the past few
months, and his body created antibodies to fight the strep.
bacteria. Some children create lots of antibodies and have very high
titers (up to 2,000), while others have more modest elevations. The
height of the titer elevation doesn’t matter. Further, elevated
titers are not a bad thing. They are measuring a normal, healthy
response – the production of antibodies to fight off an infection.
The antibodies stay in the body for some time after the infection is
gone, but the amount of time that the antibodies persist varies
greatly between different individuals. Some children have "positive"
antibody titers for many months after a single infection.
Q. When is a strep. titer considered to be abnormal,
A. The lab at NIH considers strep. titers between 0-400 to be normal.
Other labs set the upper limit at 150 or 200. Since each lab
measures titers in different ways, it is important to know the range
used by the laboratory where the test was done – just ask where they
draw the line between negative or positive titers.
It is important to note that some grade-school aged children have chronically
“elevated” titers. These may actually be in the normal range for that child, as
there is a lot of individual variability in titer values. Because of this
variability, doctors will often draw a titer when the child is sick, or shortly
thereafter, and then draw another titer several weeks later to see if the titer
is “rising” – if so, this is strong evidence that the illness was due to strep.
(Of course, a less expensive way to make this determination is to take a throat
culture at the time that the child is ill.)
Q. What are the treatment options for children with
A. The treatments for children with PANDAS are the same as if they had
other types of OCD or tic disorders. Children with OCD, regardless
of whether or not their illness is strep. triggered, benefit from
cognitive behavioral therapy and/or anti-obsessional medications. A
recent study showed that the combination of an SSRI medication (such
as fluoxetine) and cognitive behavioral therapy was the best
treatment for OCD, and that medication alone or cognitive behavioral
therapy alone were better than no treatment, or use of a placebo
(sugar pill). It often takes time for these treatments to work, so
the sooner therapy is started, the better it is for the child.
Children with strep. triggered tics should be helped by the same tic
medications that doctors use to treat other tic disorders. Your child’s primary
physician can help you decide which type of specialist your child may need to
see to receive these treatments.
Q. Can penicillin be used to treat PANDAS or prevent
future PANDAS symptom exacerbations?
A. Penicillin and other antibiotics kill streptococcus and other types of
bacteria. The antibiotics treat the sore throat or pharyngitis
caused by the strep. by getting rid of the bacteria. However, in
PANDAS, it appears that antibodies produced by the body in response
to the strep. infection are the cause of the problem, not the
bacteria themselves. Therefore one could not expect antibiotics such
as penicillin to treat the symptoms of PANDAS. Researchers at the
NIMH have been investigating the use of antibiotics as a form of
prophylaxis or prevention of future problems. At this time, however,
there isn’t enough evidence to recommend the long-term use of
Q. What about treating
PANDAS with plasma exchange or immunoglobulin (IVIG)?
A. The results of a controlled trial of plasma exchange (also known as
plasmapheresis) and immunoglobulin (IVIG) for the treatment of
children in the PANDAS subgroup was published in “The Lancet,” Vol.
354, October 2, 1999. All of the children participating in the study
had clear evidence of a strep. infection as the trigger of their OCD
and tics, and all were severely ill at the time of treatment. The
study showed that plasma exchange and IVIG were both effective for
the treatment of severe, strep. triggered OCD and tics, and that
there were persistent benefits of the interventions. However,
there were a number of side-effects associated with the treatments,
including nausea, vomiting, headaches and dizziness. In addition,
there is a risk of infection with any invasive procedure, such as
these. Thus, the treatments should be reserved for severely ill
patients, and administered by a qualified team of health care
professionals. The NIH is not currently conducting any trials with
immunomodulatory therapies, and so is not able to offer either or
Of note, a separate study was conducted to
evaluate the effectiveness of plasma exchange in the treatment of
chronic OCD (Nicolson et al: An Open Trial of Plasma Exchange in
Childhood Onset Obsessive-compulsive Disorder Without
Poststreptococcal Exacerbations. “ J Am Acad Child Adolesc
Psychiatry 2000,” 39: 1313-1315. None of those children
benefited, suggesting that plasma exchange or IVIG is not helpful
for children who do not have strep. triggered OCD or tics. There are
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