PANDAS, PANS and
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PANDAS Recovery Story: Boy age 7
PANDAS Recovery Story: Boy age 10
Read About Treating
PANDAS with Homeopathy
by Kari J. Kindem, AIT, CFHom, CHP, Classical
Homeopath, CEASE Practitioner, PANDAS and PANS Specialist
Also known as PANS:
This diagnosis was
first identified in the late 1990's. Unfortunately, still many pediatric
doctors have never heard of PANDAS, studied it, tested for it or even know about
it. It is more often that the parents who do internet research out of
desperation, then bring their child to the doctor, asking for the blood testing
and a diagnosis - not the other way around.
The National Institutes of Mental Health (NIMH)
Investigators discovered that the OCD, tics, and other symptoms usually occurred
in the aftermath of a strong stimulant to the immune system, such as a viral
infection or bacterial infection. The research indicated that there are a subset of
children with rapid onset of obsessive-compulsive disorder (OCD) and/or tic
disorders and these symptoms are
caused by group A beta-hemolytic
streptococcal (GABHS) infections.
With PANDAS, children can have dramatic
and sudden OCD exacerbations and tic disorders following
infections. The abnormal behaviors come on suddenly and are overt and easily
recognized. PANDAS has been associated with a wider range of related
behaviors. Affected children can have any combination of the following symptoms: ADHD type symptoms, OCD,
anorexia, anxiety, germ phobias, rage hyperactivity and depression
PANDAS is not the only immune system disease that may
initially cause OCD to appear suddenly. Other disorders may need
to be ruled out. They include: Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki’s Disease, and acute Rheumatic
PANDAS and PANS involve a rapid onset of symptoms and is related to an incident of strep
infection, but can be triggered by other infectious diseases as
well. We have helped "Adult PANDAS/PANS" cases and have see a wide
variety of symptoms in both children and adults who fit the
PANDAS/PANS criteria. Their cases are addressed uccessfully with homeopathy.
The symptoms present will include the criteria for diagnosis, along
with any combination
- Angry outbursts
- Anorexia or very picky eating
- Arms motions, flexing
- Aversion to bathing/washing hair
- Aversion to cutting fingernails
- Aversion to cutting hair
- Child can't fall asleep alone
- Compulsive arm movements
- Compulsive behaviors
- Compulsive eating
- Compulsive hand motions
- Constipation - severe
- Bedwetting (even in older kids)
- Eye blinking
- Eye rolling
- Fearfulness - excessive
- Fears worse at night
- Fear of the dark
- Fear of germs/germ phobias
- Handwriting difficulty
- Handwriting sudden changes
- Head twitching
- Head shaking
- "High maintenance" nature
- Inability to focus
- Inability to sleep at night
- Jerking in limbs
- Jerking while asleep
- Makes mouth noises
- Makes humming noises
- Mood swings
- Night mares
- Night terrors
- Night sweats
- Super silly behaviors
- Sensitivity to light
- Repetitive behaviors
- Throat clearing
- Rage episodes
- Sensory issues
- Separation anxiety
- Stomach tics
- Suicidal thoughts
- Urinary Frequency
- Violent behaviors
- Whining, clingy
Below is the medical symptom criteria
Additional symptoms, such as severely restricted food intake, may also
occur such as in anorexia.
Symptoms include sudden onset of OCD and/or Tics along with a
least two other following systems.
- repetitive vocalizations or body movements
or abnormal movements; Tourette Syndrome
Irritability or aggression
Inability to concentrate or ADHD
Deterioration of learning
Developmental or age regression
Download Symptom Scale for Parents for PANDAS - PANS (PDF)
Modifying the PANDAS Criteria to Describe PANS (PDF)
Diagnostic Criteria for PANDAS:
obsessive-compulsive disorder and/or a tic disorder
Pediatric onset of symptoms
from age 3 years to puberty
Episodic course of symptom
Association with group A
Beta-hemolytic streptococcal infection (a positive throat culture for
strep or history of Scarlet Fever)
Association with neurological
abnormalities such as hyperactivity, or adventitious movements, such as
rapid, jerky movements.
Lab and Blood Testing For PANDAS
Strep Throat Culture:
rapid throat swab and 48-hour strep culture is a good first step.
A throat culture for GABHS – Group
streptococcus (Streptococcus pyogenes, or GAS)
should be taken even if the child has no complaints of a sore throat. Even
if the quick in-office strep test is negative, it can often be seen
the longer 48 hour throat culture come back positive on more than one
order to have a reliable throat culture, the swab must reach the top back part of the throat which typically is slightly uncomfortable
and makes the child gag. A throat culture swab that only touches the back of
the tongue will give a falsely negative result, as will one that is just
touched to the sides of the throat. Poorly done throat cultures are a common
cause of false negative results. Rapid strep tests can also give falsely
negative results, as they miss about 10-15% of cases of strep throat. If the
rapid strep test is negative, an overnight culture should be done to make
sure that there aren’t strep bacteria present.
In addition to diagnose PANDAS, the doctor should order specific blood tests to look
for immunologic evidence of a recent strep infection. As blood strep titers
can stay elevated for many months, often a repeat test may be needed a few
weeks later. If the titer is continuing to rise then this is strong
support for the illness being due to strep. If it is declining, then
this may serve as a reference point for future blood work if at another
point in time there is a suspicion of a recurrent strep infection.
About The ASO Titer
- Blood Test for Strep
Antistreptolysin O, commonly called that
ASO titer test can help distinguish beta-hemolytic Group A
Streptococcal rheumatic fever from acute rheumatic diseases.
is an antibody found in human blood produced upon an infection by Group A
In an infected individual, the Group A Streptococci produced
Streptolysin O acts as a protein antigen and causes the person’s immune system to mount a
defensive response with Antistreptolysin O antibodies. A rise in ASO titer
level begins about 1 week after infection and peaks 2-3 weeks later. In the
absence of complications or re-infection, the ASO titer will usually fall to
pre-infection levels within 6-12 months. Approximately 80-85% of the
patients who demonstrate a Group A Streptococcal infection will also
demonstrate an elevated ASO titer.
Group A Streptococcus has caused more widespread diseases than any other
group of bacteria. Upon initial infection by Group A Streptococcus, a
person may present with a sore throat and general malaise. However,
there also exists a correlation between the initial illness and development
of post-streptococcal syndromes. Of these, acute rheumatic fever and acute
glomerulonephritis are the most debilitating. To determine if a
streptococcal infection was the root cause, an Antistreptolysin O test is
A marked rise in
titer or a persistently elevated titer indicates that a Streptococcus
infection or post-streptococcal sequelae are present. Both clinical
and laboratory findings should be correlated in reaching a diagnosis.
A normal ASO reference range for adults with most
labs is <100 Todd
units or a 1:99 dilution.
The majority of physicians will order a
differential diagnosis panel to be run on a sample consisting of ASO titer,
C-Reactive Protein (CRP) and Rheumatoid Factor (Rf). Eighty percent of Group
A Streptococcal infected patients also have elevated CRP levels greater than
negative test result means you have likely not had a recent strep infection.
The healthcare provider may repeat the test again in 2 - 4 weeks.
Sometimes a test that was first negative will come back positive. Normal
value ranges may vary slightly among different laboratories. Talk to your
doctor about the meaning of your specific test results.
abnormal or positive test means you recently had a strep infection, even if
you had no symptoms.
The ASO test may stay positive (sometimes called detectable) for 2 to 4
months afterward you are first infected.
False positive ASO titers can
This can be caused by increased levels of serum
beta-lipoprotein produced in liver disease and by contamination of the serum
with Bacillus cereus and Pseudomonas. ASO titers are elevated in 85% of
patients with rheumatic fever but may not be elevated in cases involving
skin or renal sequelae.
Anti-streptococcal titers can also be used to diagnose a
strep throat, but require that two separate blood tests
are done several
weeks apart and timed just right to show a “rising titer.” Strep
infections trigger the production of anti-streptococcal antibodies, which
are measured by the titers. When the child is initially infected with the
strep bacteria, his titers will be low, but should increase over the next
4-6 weeks as more anti-streptococcal antibodies are produced. If the child’s
blood is tested too late, the titers may already be elevated, but it won’t
be possible to know if these “high titers” are related to the current
difficulties, or if they’re left over from a previous strep infection, since
titers can remain elevated for several months or longer. Thus, a single
“high anti-streptococcal antibody titer” isn’t sufficient to prove that a
strep infection was the trigger for the child’s symptoms.
ASO rises approximately
1-4 weeks from colonization and Anti-DNAseB rises between 6-8 weeks from
colonization. Even then ASO and Anti-DNAse B together fail to show a rise in 31% of children with strep
have to be measured at two points (typically a week apart. ASO is
typically measured at 4 and 5 weeks from the date of suspected infection and
Anti-DNAseB measured at 6 weeks and 8 weeks from the suspected event. The
two data points are needed to look for a rise. Absolute values are not as
important as the rise/fall of the titer.
For this reason it is important that both samples are done by the same lab.
In the absence of having two titers, many labs use a measure known as the
"upper-limit-of-normal". This value is helpful if the measured value is
significantly higher than the upper limit. If it is lower than the ULN,
then typically two samples are needed to look at the slope/trend.
A strep ASO and D-Nase
Titer test is beneficial in helping to establish the strep connection.
Ask the doctor/laboratory to give you a numeric result – not just positive
or negative. Anything above the labs normal range should be quantified with
a specific numerical value. Many times the titers will be only moderately elevated – and at times
not elevated or extremely elevated. This is the variable nature of the strep
bacteria. Since each lab measures titers in different ways,
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.
About the D-Nase Test (also
known as Antideoxyribonuclease B titer; ADN-B test)
This is the short name for "deoxyribonuclease (DNase)
test" and it detects the degradation of
DNA by bacterial species that produce DNase.
The purpose is to see if the
microbe can use
as a source of carbon and
energy for growth. Use of
is accomplished by an enzyme
Anti-DNase B is a blood test to look for antibodies to a
substance produced by Group A Streptococcus, the bacteria that
cause strep throat. A blood sample is needed and no special preparation is
necessary. This test is most often done to tell
if you have previously had a strep
infection and if you might have rheumatic fever or kidney problems (glomerulonephritis)
due to that infection. When used together with the ASO titer test, more than
90% of past streptococcal infections can be correctly identified.
A negative test is normal.
Cunningham Panel of Tests
A series of 5 tests to help determine the
“likelihood of the person’s condition being auto-immune in nature”,
including possible PANDAS, is commercially available by
This test is derived from the research done by Dr. M. Cunningham.
Currently the panel is comprised of five different tests ($925 if no
insurance, $425 deposit with the test with insurance). Four of these tests measure
the level of circulating antibodies directed against different neurologic
receptors or antigens, and one assay which measures the immune
stimulating intensity of the person’s serum against neuronal cells. The
collective results of the panel of 5 tests will provide an assessment as to
the anti-neuronal and autoimmune state of the person at the time of
testing. The physician is provided a composite report containing the 5
assay results, each compared to normal controls. The collective results can
aid the physician in determining a proper diagnosis and support the
appropriate treatment decision. Currently, the Cunningham Panel does
not include testing for streptococcal or anti-streptococcal antibody titers
in PANDAS. Their goal at this time is to assist the physician and family by
determining if there are elevated anti-neuronal antibodies and neuronal cell
activating antibodies currently circulating in the blood, rather than
attempting to identify the infection related to the autoimmune condition.
PANS is also associated with other infections. Therefore, in the future we
may add additional tests to the Cunningham Panel that would assist in
identifying these infectious agents.