PANDAS~Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep
PITAND~Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders
PANS~Pediatric Acute-onset Neuropsychiatric Syndrome 

This site is designed to provide Long Island-specific resources for families of children suffering from PANDAS & PITAND as well as general information & updates which you may be able to use no matter where you are located.  So look around, check out the Links page & see if anything here can help you. 

These disorders are often misdiagnosed for years, and are progressive & debilitating if untreated.  It is extremely frustrating for both the child with PANDAS or PITAND & their family.  We have a Sibling Support section for siblings to submit drawings, post thoughts & tips to help others in this process. 

This site is brand new & still evolving, so please check back often.  We will also offer listings of professionals on Long Island who do believe PANDAS & PITAND (& now PANS) exist, because many still do not.  We'll post updates on treatment options, etc. continually as we get new information.   Please keep in mind that these conditions are still being researched & are not always readily accepted as a "diagnosis" by many doctors still - especially on Long Island.  Currently, the NIH is conducting a study with Bayer on the use of IVIG Infusion as treatment for PANDAS. 

The doctors listed on this site are some who either already work with PANDAS, PITAND & PANS patients or who are willing to.  We also provide links to other sites with physician information.  Feel free to post information you think would be helpful on the Parents Forum, or send it in the Contact Form & thanks for visiting!

PANS/PANDAS/PITAND Symptoms start with sudden onset & can be any combination of:  (Note:  This may not be a complete list, as these disorders affect everyone differently)

  • OCD  - Repetitive physical & mental behaviors, intrusive thoughts, inappropriate fears/phobias, eating disorders, hair pulling 
  • Motor & Vocal Tics - Often misdiagnosed as Tourette Syndrome - various & evolving tics 
  • *Incontinence/Bedwetting - that wasn't present prior to onset

    Sleep Disturbances - Insomnia, inability to stay asleep, frightful sleep, extreme nightmares 
  • Appearance of being "terror stricken", or vague but pervasive feeling of fear that is constantly present
  • ADHD Symptoms - Hyperactivity, inattention, fidgeting

    Behavior Regression - Severe separation anxiety usually inappropriate to age, extreme insistence to remain at or close to home, "baby talk", need for constant reassurance
  • Mood Changes - Irritability, sadness, depression, emotional swings, hopelessness
    Hallucinations - Auditory, visual, sensory (sensation of bugs crawling on them, etc.)
  • Cognitive Deterioration - Especially memory & math skills
  • Fine/Gross Motor Changes - Pronounced deterioration in handwriting, loss of coordination
  • Joint/Muscle Pain
  • Exhaustion, lack of energy, basic everyday tasks can be a MAJOR struggle
  • Aggressiveness
  • Gastro-Intestinal issues similar to IBS
Currently the treatment options for PANDAS & PITAND are:
*Antibiotics
*Steroid "burst"
*Sometimes a longer course of steroid
**IVIg - Intravenous Immunoglobulin Infusion or Plasmapheresis**Not all doctors/facilities do IVIg or Plasmapheresis**  
Note: Cognitive Behavioral Therapy can help your child tremendously in dealing with the various chronic and fluctuating symptoms that PANDAS produces, including OCD behaviors, intrusive thoughts, etc.   It's critical to have a therapist that your child is fully comfortable with, and who either knows about PANDAS or is willing to learn.
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