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 20% of the 70 children have had repeated strep infections.

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 equires an entire clinical picture. 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.

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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

IMMUNOLOGICAL WORKUP: 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

IgG – subclass 1, 2, 3, 4 (Source PDF)

And, IgA and IgM (Source Website)

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 SWEDO/SNIDER 2003, Post-Streptococcal Autoimmune Disorders of the CNS.

And SWEDO, et al 2000, MRI Assessment of Children with OCD & Tics Associated with Strep.

And 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.

IMPORTANT SCALE OF OCD and TIC DISORDER: Attached are the scales doctors used 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. Seeing something measureable is helpful for doctors. OCD Scale and Tic Scale

FUTURE TESTS FOR PANDAS Are BEING DEVELOPED TO PROVE PANDAS, BUT ARE NOT AVAILABLE FOR PUBLIC YET: Some researchers are working on creating tests that measure cross-reactive antibodies that are elevated in a PANDAS child's brain. Show your doctor the following studies by Dr. Kirvan, et al. They show that movement disorders in Sydenham Chorea patients – a movement problem caused only by strep – and PANDAS children are similarly elevated.

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.

Kirvan, et al (2003) Mimicry and Auto-antibody mediated neuronal Signaling Cells in Sydenham Chorea.

And, Kirvan, et al (2006) Antibody-mediated neuronal cell signaling in behavior and movement disorders.

PLEASE: See page 3 figure a. – showing elevation in PANDAS children at Acute Stages of Exacerbations.