The information below is based on anecdotal evidence from approximately 70 PANDAS current (2008/2009) patient histories. Many of the children have immune systems that seem to have been chronically irritated since early childhood. Parents often indicate with their PANDAS child: chronic allergies, chronic hoarse coughs that sound “asthma-like” and inflamed sinuses.
About 1/4 of the 500 children here report chronic (more than once per year) strep infections prior to PANDAS onset. Many PANDAS case onsets are the result of a first or second strep infection only.
There is currently no medical study documenting the helpfulness of the below tests. But we believe these tests have been useful for doctors and parents in understanding the need to provide antibiotics or possible IVIG/Plasmaphoresus for the PANDAS child. It also rules out other autoimmune malfunctions that can be exacerbating the child.
PANDAS requires an entire clinical picture. PANDAS is currently a clinical diagnosis and open to interpretation and subjective observation. There are currently no conclusive diagnostic blood or neurological tests to be relied on. Sometimes the below tests don’t show definitive results. ONLY the SUDDEN DRAMATIC ONSET of Movement Issues (tics/Tourette’s-like/chorea) and Acute Dramatic Anxiety issues are the hallmarks of the PANDAS picture. Below you will find the SCALE OF OCD/TICS that measure what an ACUTE onset looks like.
The 2012 NIMH revised criteria for PANDAS can be found here.
Topics Discussed in this Section:
- Strep Titer Tests
- Immunological Workup
- PANDAS/PANS Symptom Scale
- OCD and TIC Disorder Scales
- The Cunningham Panel of Tests
Strep Titer Tests
An ASO-titer and D-nase B titer. 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.
An active strep infection can give you numbers in the 1,000′s or not. Also, like in all literature regarding Rheumatic Fever, it is commonly known that strep has the ability to create “molecular mimicry” of the child’s own autoimmune response, therefore stopping the titer-rising process. Please look at the ASO Titer Table where you will see most of the PANDAS cases at low to moderate titer increases.
If the child is a “carrier” their strep titers will not raise at all. If a doctor doubts this ask them to review the literature on Rheumatic Fever (RF) in the American Academy of Pediatrics Guidelines for Rheumatic Fever. Rheumatologists are aware of the fact that strep creates a “molecular mimicry” and sometimes titers do not elevate. The symptoms for RF are well-known, however, achy joints, leg pains, EKG showing heart valve issues, so doctors are quicker to diagnose RF. The symptoms for PANDAS are simply just not well documented and you must work to educate your physician about titer levels NOT giving a definitive diagnosis of PANDAS. Dr. Gene H. Stollerman, in 2003, discusses this in the Internet Journal of Cardiology in relationship to Rheumatic Fever (page 3) and PANDAS (page 13).
A good study expressing the dilemma regarding lack of raised titers and typical strep infection presentation is discussed in a recent study (2002) by Drs. Marie Lynd Murphy and Michael E. Pinichero. Quote:
“A notable feature of the tonsillopharyngitis episodes was the lack of severity. Few children had fevers, and their sore throats were mild. The tonsillopharynx was moderately to intensely red, but exudate was scant or absent and cervical adenopathy was minimal. None of these children displayed the typical features of classical severe GABHS tonsillopharyngitis, although 1 patient had scarlet fever rash. There was a latent period between GABHS.” Murphy & Pinichero (2002) Study.
View examples of test results of PANDAS children by visting our ASO/D-NASE/Strep Test Table.
Several cases have been found to have had long-term, latent immunological weakness. Perhaps these viruses/bacteria have taxed the child’s immune system and then created a further weakness for PANDAS. Blood work-ups on the following are good to do to illustrate the immune system being taxed. Sometimes, with IgG deficiencies, IVIG can be covered by insurance though one must push the insurance company to do so.
- Mycoplasma pneumanaie
- Ebstein’s Barr Virus
- Lyme Disease – Traditional Western Blot should be done for those in lyme regions of the world. Lyme testing and treatment is expensive. Some parents and doctors do an experimental/non-medically validated Igenex lyme test that shows antibodies that MAY be present. Approach Igenex testing with a doctor who looks at this from a comprehensive understanding of the immune system, PANDAS, and not focused only lyme as a the sole cause of illness. Lyme testing remarks
- Herpes Simplex
- CD4 (measures generally over-reactive immune response)
- IgG – subclass 1, 2, 3,
- IgA and IgM
For an explanation of possible deficiencies, please reference IgG Subclass Deficiency and Specific Antibody Deficiency .
- MRI: It is very important to get a Pediatric Neurologist involved. There area few though rare cases of PANDAS that have involved chorea encephalopathy and other related issues. See the following:
- SWEDO/SNIDER 2003, Post-Streptococcal Autoimmune Disorders of the CNS.
- SWEDO, et al 2000, MRI Assessment of Children with OCD & Tics Associated with Strep.
- MABROUK/EAPEN 2008, Challenges in the Identification and Treatment of PANDAS: A Case Series.
This is not the norm but it is very important to check because brain inflammation can create serious longterm debilitation.
Some current cases have been shown to have small inflammatory issues, more like what is seen in a migrane, but it is worth noting AGAIN, because you are creating a clinical picture for the child. One child had inflamed Virchow Robin Spaces around the brain stem/basal ganglia area. In and of itself, not dangerous, but indicates possible neurological basal ganglia irritation.
There is no instrument that specifically shows inflammation of the basal ganglia. These are nerves. On one occasion in our group a SPECT SCAN (showing blood flow displacement) indicated basal ganglia inflammation.
MRI’s show the displacement of fluid in the brain, swelling. In severe cases a PET scan can be done, but it does have radiation issues that should be discussed with the doctor. MRI’s do not involve radiation, but magnetic resonance only.
- EEG: A few children have been found to have irregular EEG’s. This could be PANDAS or some other frontal lobe seizure issue which can create separate psychological or physical issues. It is good to rule out this type of disorder particularly if your child is having rages or lapses in memory or other neurological dysfunctions.
PANDAS/PANS Symptom Scale
The following scale is based on the clinical experience of Susan Swedo, M.D., Miroslav Kovacevic, M.D., Beth Latimer, M.D., and James Leckman, M.D., with the help of Diana Pohlman, Keith Moore and many other parents.
OCD and TIC Disorder Scales
The following scales are what doctors use to measure the severity of OCD and TICs. Review these scales and show them to your doctor and communicate that your child went from normal levels (1-5) to abnormal (10 and above) overnight. OCD may present as severe anxiety. Do not assume your child does not fall into the realm of OCD because they do not show the “stereotypical symptoms” of OCD, such as hand obsessive washing and fear of germs.
The Cunningham Panel of Tests
A test to help determine the “likelihood of the patient’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.
Dr. Cunningham’s research measured cross-reactive antibodies that are elevated in a PANDAS child’s brains. Many children got assistance with PANDAS treatment from Immunologists if the results of this blood test indicate PANDAS-like antibody levels. This study was conducted at the University of Oklahoma.
In the following studies by Dr. Cunningham, et al., they show that movement disorders in Sydenham Chorea patients – a movement problem caused only by strep – and PANDAS children are similarly elevated. In both illnesses the basal ganglia are activated by a negative autoimmune reaction to strep.
This is important to show doctors so they understand that your child is not simply suffering from a psychological issue and may be having movement or mood issues due to strep antibody cross-reactivity from auto-antibodies (misbehaving antibodies along the basal ganglia nerves) called anti-lysoganglioside and anti-tublin.
PLEASE: See page 3 figure a. – showing elevation in PANDAS children at Acute Stages of Exacerbations.
In 2010, additional funding for Dr. Cunningham research was secured through Pepsi Global Giving. In August 2011, an update on findings was publicly released by Pepsi Refresh Project PANDAS, those that won the grant money. The public report was as follows…
Progress Report ~ Pepsi Global Giving Project PANDAS
“Dr. Cunningham and her lab thank everyone for the opportunity to advance the work on PANDAS and related diseases.
Pepsi Global Giving Funds have allowed us to continue research on in vitro tissue culture studies of the autoantibodies against the brain in the childhood illness named pediatric autoimmune neurologic disorder associated with streptococcal infections or PANDAS. PANDAS is a debilitating childhood illness leading to obsessions, tics and other symptoms such as enuresis and anorexia. PANDAS illnesses debilitate the entire family. Studies suggest that streptococcal and potentially other infections may lead to the induction of autoantibodies against the brain and trigger the onset of disease. Pepsi funding helped us to hire an expert B cell immunologist who is investigating monoclonal antibodies produced from PANDAS. This new information will allow us to look more closely at many more autoantibodies from PANDAS in in vitro experiments. The main focus of our studies has been investigation of antibody producing B lymphocyte cell lines(antibody producing cells) previously produced in our laboratory from Pediatric Autoimmune Neuropsychiatric Disorder or PANDAS. B lymphocyte hybridoma cell lines were cultured by tissue culture in Iscove’s Modified Dulbecco’s medium and the antibodies produced by these cell lines were analyzed for reactivity with brain autoantigens which may be targeted in PANDAS. Our hypothesis is that autoantibodies are produced against the brain after infections and can signal neuronal cells in the brain and cause abnormal neurologic symptoms including movement and behavioral disturbances such as tics and obsessive compulsive disorder.
New data may explain how signaling in brain tissues may play a role in inducing abnormal amounts of neurotransmitters in the brain. We know that neuronal cell signaling is elevated in cultured neuronal cells when treated with antibodies from PANDAS. The antibody reactions may be linked to symptoms to better understand how the antibodies may play a role in disease. Our experiments have utilized the Enzyme Linked Immunosorbent Assay(ELISA) to detect IgG autoantibodies sera from PANDAS and related diseases. Antibody reactions such as the neuronal cell signaling may be linked to symptoms. We hope to better understand the antibodies and how they may play a role in disease. Our experiments will continue to test monoclonal antibodies from PANDAS for binding in the ELISA and for functional signaling of neuronal cells. Our in vitro studies will provide new data that can be translated to human disease. “
For more information on Dr. Cunningham’s work, please view her 2011 video presentation “PANDAS and Autoimmunity”.
Where can I have this testing done?
To order The Cunningham Panel of Tests within the United States: MOLECULERA LABS
To order The Cunningham Panel Tests internationally : TESTING VIA WIESLAB