Diana Pohlman: Parent Reports and the Future of Research





P.A.N.D.A.S.
Parent Reports and the Future of Research
Diana Pohlman – April 2012 California Conference




Location of 400 cases of PANDAS reported by parents to pandasnetwork.org as of October 2011.

Onset ranged from 1995 to October 2011. The majority from 2007 to present. To date 700 cases have been reported and registered with location with an additional 650 parents due to privacy issues choosing not to disclose location on the pandasnetwork.org all-volunteer website.

As of May 2012 1,500 persons are registered with the website.


PANDAS / PANS Defined as of April 2012 – Swedo, Leckman, Rose


SUDDEN ONSET OF OCD and/or Severe Anxiety

Two or More of the Following:

  • Tics or abnormal movements
  • Emotional Lability
  • ADHD or Inattention
  • Sensory Sensitivites
  • Deterioration in Learning Abilities
  • Sleep or Nighttime Difficulties
  • Urinary Issues
  • Anorexia



WHY IS THERE CONTROVERSY?

  • LACK of IMAGING Technology showing the Basal Ganglia Inflammation
  • LACK OF KNOWLEDGE about the BBB
  • LACK OF BLOOD TESTS proving brain inflammation - this is why Cunningham’s CamKinase II and antibody results are signficant and must be funded

 

FUTURE RESEARCH is Driven by the Following Humanitarian Doctors

  • Dritan Agalliu, Neuroscientist, UC Irvine – Study of the Blood Brain Barrier
  • Harry Chugani, Neurologist, Univ. of Michigan – PET SCANS imaging the basal ganglia
  • Madeleine Cunningham, Immunologist & Strep Researcher Univ. of Oklahoma – CamKinase II and auto-antibodies attacking the brain
  • Tanya Murphy, Psychologist, Univ. of S. Florida – Azithromycin efficacy
  • PandasNetwork.org – Epidemiological Survey developed by Denise Whitty, Ph.D. and Dr. Tanya Murphy
  • IOCDF’s impact in encouraging awareness. We are not certain yet but it will be positive
  • Discover magazine highlighting Dr. Ira Lipkin’s remarks on PANDAS/PANS/Autism
  • Possible Tonsil Study
  • NIMH-YALE IVIG study – 18 enrolled to date

 

Dr. Madeleine Cunningham’s Lab Results:


CamKINASE II Levels During Healing
Ancedotal report of 7 yr old child followed for one year –
post-ivig and antibiotic treatment


  • Re-exacerbation 75% above normal
  • Three months later 65% above normal
  • Six months later 6% above normal
  • One year later Normal level NORMAL LEVEL

 

Survey of 500 Families

Self-reports by parents to pandasnetwork.org database April 2012

Age of Onset:
  • 1 to 3 years 11%
  • 4 to 9 years 70%
  • 10 to 13 years 19%
Symptoms Described:
  • OCD only 35%
  • Tic only 19%
  • Both 46%
Infection Reported:
  • Strep 82%
  • Other including lyme, chicken pox, mycoplasma 18%



Family medical history in first or second generation
SURVEY of 100 Families self-reports to pandasnetwork.org as of Sept. 2011

70% of families reported BOTH:
  • Autoimmune Illness
  • Strep Related Severity Illness


Important Findings

  • STREP is predominant infection thought to ignite future PANS episodes
  • PANDAS can occur in siblings simultaneously
  • Clusters of outbreaks evident
  • ANY autoimmune illness or inflammatory issues like Celiac’s, impetigo, extreme allergies, chronic teeth or other infections cause problems
  • PANDAS can be minor in some children
  • Untreated exacerbations are usually more intense over time
  • The longer illness is untreated, the harder to arrest
  • No Vaccinations during first year of healing
  • Tonsils and adenoids removal if relapses, debated but sometimes helpful


HEALING TIPS

  • Doctors report 75% success with treatment – antibiotics, ivig or plasmaphoresus.
  • REPEAT MONTHLY IVIG’s are not promoted by majority of doctors unless a severe autoimmune deficiency is found. REPEAT IVIG’s are sometimes detrimental.
  • Be EXTREMELY VIGILENT for one year
  • Think “anti-inflammatory” and let the BBB heal. It takes minimum one year from onset to recovery.
  • Avoid illness or exposures
  • Do bloodwork for autoimmune issues or other illnesses
  • No rollercoasters, too much t.v., huge crowds – play Mozart! And enjoy nature!
  • Relapses have occurred with lengthy URI’s, food poisoning and extreme allergies
  • Don’t be afraid. My personal feeling – this is a sequela of Rheumatic Fever or Sydenham Chorea and they will outgrow this!
  • Prophylactic antibiotics are important until you are CERTAIN you are out of the woods and even then…………………


Enjoy Life with Your Child During Times of Calm –

they are in there and need you.

Seek Supportive Friendships – this syndrome takes time to heal
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