About PANDAS & PITAND and links

PANDAS stands for Pediatric Autoimmune Neuro-psychiatric Disorders Associated with Streptococcus infections.

PITAND stands for Pediatric Infection Triggered Autoimmune Neuro-psychiatric Disorders.

These conditions are autoimmune in nature, meaning that there is something malfunctioning in the patient’s immune system, causing it to attack self… it is similar to what happens in Rheumatic Fever, except that the brain is being attacked instead of the heart, causing encephalitis (inflammation of the brain), particularly in the basal ganglia region.  The proteins on the surface of the strep bacteria are similar to the proteins on the surface of nerve cells in the basal ganglia.

A gene is turned on following an infection, breaching the blood-brain barrier and causing the immune system’s antibodies attack the brain, leading to a myriad of challenging symptoms for the patient as well as their family.  Once the gene has been turned on, it must be turned off to resolve the condition and presenting symptoms – which resolves gradually over a period of weeks to months.  If caught very early in the process, in some cases, antibiotics might be sufficient and steroids/NSAIDS have been used in some patients with some success to decrease brain inflammation; otherwise, treatment modalities such as Plasmapheresis (including Plasma Exchange) or Intra-venous Immune Globulin therapy may be utilized.

Phenotype:  The PANDAS patient is frequently a highly intelligent and communicative child, who is a very good student.  These children have been developing on a typical or advanced trajectory and suddenly fall off the curve in dramatic ways.

The hallmark of PANDAS is the dramatic, overnight presentation, with sudden onset. Parents often recall the “exact day” of symptom onset.  Episodic exacerbation is typical, although it does not follow the wax/wane seen with typical OCD related to stress or illness – it is not present one day and the next day, it is full blown.  While Group A beta-hemolytic strep infection is most often the triggering infection, exacerbations may follow other illnesses (viral or bacterial).  Even exposure to another ill person can be a triggering event.  For the initial exacerbation, onset can have a delay of five to nine months, making it difficult to tie the two together.  However, in the next exacerbation, the time delay is shortened to days and in subsequent exacerbations, symptoms are observed causing parents to request a strep throat test.  Note that the Group A strep may not necessarily be present in the throat… it can be present in the sinuses, on the skin, etc.

A child does NOT have to have a confirmed strep infection or elevated titers to have P.A.N.D.A.S.

Diagnostic Criteria (as defined by Susan Swedo, lead investigator of P.A.N.D.A.S. at NIMH) include – must have all five:

  1. Presence of OCD and/or Tic disorder
  2. Pre-pubertal onset
  3. Episodic course of symptom severity
  4. Association with neurological abnormalities
  5. Temporal relationship between symptom exacerbations and streptococcal infections 

In her 2006 lecture with UC Davis MIND Institute, Susan Swedo of NIMH noted three distinct patterns of antibody response in the basal ganglia, based on the following groups of symptoms which overlap, helping to identify the area of the basal ganglia that is involved.  In the most severe cases, two or three areas are effected, rather than one:

  1. Primary Tics
    • Motoric Symptoms, including tics, motoric hyperactivity, simple compulsive rituals, and handwriting changes
  2. Primary Anxious/OCD
    • Separation anxiety with night-time fears and enuresis/daytime urinary frequency
  3. Primary ADHD with Tics and OCD
    • ADHD with emotional lability and cognitive changes

These children are likely to have some of the following symptoms that accompany the OCD or tic disorder [Swedo1998][Moretti2006]:  A child does NOT have to have a confirmed strep infection or elevated titers to have P.A.N.D.A.S.  Know the signs…

  • Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety) and/or Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation) (present in virtually ALL cases)
  • Adventitious or Choreiform movements such as milk-maid grip, fine finger playing movements in stressed stance (95%)
  • Dysgraphia, which is a deterioration in fine motor skills and is usually noticed in handwriting (89%)
  • Daytime urinary frequency/urgency (in absence of urinary tract infection) and/or enuresis (88%)
  • Inability to concentrate (87%)
  • Sleep Disorder(s) such as insomnia, inability to fall asleep or remain asleep, frightful sleep, nightmares (84%)
  • Dilated pupils & may appear terror stricken (83%)
  • Various and evolving tics (72%)
  • Hyperactivity/Inattentiveness (71%)
  • Emotional lability, which may be extreme, perhaps including rages in a child who rarely/never had temper tantrums as a toddler (66%)
  • Short term memory loss, which is often seen after an aggressive rage episode as well as other times, making academics more challenging (62%)
  • Learning disability (not present before and most commonly effects math skills) (62%)
  • Aggressiveness/Rages (62%)
  • Personality changes (54%)
  • Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)
  • Fidgetiness (50%)
  • Behavioral Regression (separation anxiety, insistence to remain close to parent (usually mother) and/or home, “baby-talk”, temper tantrums) (40%)
  • Oppositional defiant disorder (40%)
  • Tactile defensiveness and/or sensory sensitivities, which include sensitivities to light and/or sound and/or touch and/or smell (40%)
  • ADHD (40%)
  • Irritability (40%) 
  • Impulsivity/Distraction (38%)
  • Major Depression (36%)
  • Overanxious (28%)
  • Marked deterioration in handwriting or math skills. (26%)
  • Eating disorders, including anorexia, particularly fear of choking, being poisoned, contamination fears, fear of throwing up (17%)
  • Dysthymia (12%)
  • Hallucinations (9%)
  • Non-specific gastro-intestinal complaints are frequently reported.

References:

Please see the following references for additional information about PANDAS / PITAND:

Links:

Video:

Support:

Research:

Active Clinical Research Studies:

 

Please contact us if you have any questions!

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Recent events: Dr Susan Swedo – NIMH ~ The Coffee Klatch

Recent Episode:  Dr Susan Swedo – NIMH

If you missed the live version, please click the link above to listen to the recording.  :~)

The Coffee Klatch
Category: Parents

I am honored and personally thrilled to present Dr Susan Swedo, Senior Investigator Behavioral Pediatrics and Developmental Neuropsychiatry her laboratory studies childhood-onset obsessive compulsive disorder and related disorders, including Tourette syndrome and Sydenham chorea. Dr Swedo is the leading researcher in PANDAS and related disorders. Dr Swedo joins us to discuss the latest in research and the new clinical trials being conducted to find treatments for these disorders.

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