PANDAS,  PANS and Homeopathy

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

What is PANDAS?

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 streptococcus 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 symptoms.

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 Fever.

Below is the medical symptom criteria for PANDAS.
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.

• Sensory sensitivities

• Separation anxiety

• Sleep difficulties

• Personality changes

• Urinary frequency

• Tics - repetitive vocalizations or body movements or abnormal movements; Tourette Syndrome

• Irritability or aggression

• Inability to concentrate or ADHD

• Deterioration of learning abilities

• Developmental or age regression

Download Symptom Scale for Parents for PANDAS - PANS (PDF)

Download Article: Modifying the PANDAS Criteria to Describe PANS (PDF)

Diagnostic Criteria for PANDAS:

• Presence of obsessive-compulsive disorder and/or a tic disorder

• Pediatric onset of symptoms from 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 such as hyperactivity, or adventitious movements, such as rapid, jerky movements.

Lab and Blood Testing For PANDAS 

• Strep Throat Culture:
  Getting a rapid throat swab and 48-hour strep culture is a good first step. A throat culture for GABHS – Group A beta-hemolytic 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 occasion. In 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.

• Blood Tests:
  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. ASO is an antibody found in human blood produced upon an infection by Group A Streptococcus bacteria.  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 performed.  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 1.2 mg/dL.
     

  • A 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.
     

  • An 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 happen.
    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 colonization. Titers 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, 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.

• 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 DNA as a source of carbon and energy for growth. Use of DNA is accomplished by an enzyme called DNase.  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. This means:

  • Adults: less than 85 units/mL
  • School-age children: less than 170 units/mL

  • Preschool children: less than 60 units/mL
    Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.  The examples above show the common measurements for results for these tests. Some laboratories use different measurements or may test different specimens.  Increased levels of DNase B levels may indicate rheumatic fever or post-streptococcal glomerulonephritis after strep throat or strep-related skin infection. 

• The 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 Moleculera Labs. 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.

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