Rare Disease Day ~ PANDAS Awareness

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Rare Disease Day ~ PANDAS Awareness

Monday, February 28 is Rare Disease Day.  As you will see later in this post, PANDAS is much more common than most people know; however, it is believed to be grossly under-diagnosed and mis-diagnosed at this point.

Most children have strep throat infections at some point during their childhood.  For most, a prescription of antibiotics will resolve the infection and prevent complications. This is not the case for all children.  Some develop complications, one of which is PANDAS:  Pediatric Auto-immune Neuropsychiatric Disorder Associated with Streptococcus.  For more information, see my “About and Links” section by clicking it at the top of any page.

Statistics on PANDAS children:

  • Statistically speaking, Dr. Sue Swedo (Senior Investigator, NIMH) estimates 5% of the pediatric population develop PANDAS.
  • Given that there are approximately 75.6 million children in the United States alone, this represents 3,780,000 children with PANDAS in the United States alone!
  • Given a world population estimated in recent years of 2.2 billion, this number represents 110,000,000 children with PANDAS in the world!

Unfortunately, it is extremely under-diagnosed or mis-diagnosed as many of the psychiatric presentations are confused with psychiatric conditions and children are medicated with psych drugs, rather than receiving the treatment they require to eradicate the infections and help the immune system to heal by de-activating the gene that was initially activated, starting the cascade of events in the auto-immune process.

For these children, its not “just strep”.  Children’s lives are turned completely upside down… and families as well, as a result.  My child became someone whose personality I did not recognize… literally overnight!

Know the signs ~ taken from one of our doctors office cards:

You DON’T need to have a diagnosed Strep infection to have PANDAS.

  • Obsessions/preoccupations/fixed ideas/unwanted feelings/Anxiety
  • Compulsions
  • Choreiform movements
  • Emotional Lability/Rages/Fight or Flight behavior
  • Personality changes
  • Bedtime fears/rituals
  • Separation anxiety
  • Oppositional Defiant Disorder
  • Tactile/sensory defensiveness
  • ADHD
  • Motor and/or vocal tics
  • Marked deterioration in handwriting and/or math skills
  • Daytime urinary frequency
  • Anorexia/fear of choking/being poisoned/contamination fears/fear of throwing up

If you have a child or know anyone who has a child with these symptoms (and who has been exposed to or might have a history of Strep Throat, Mycoplasma or Lyme Disease, please see a doctor who is able to treat the child and restore wellness – remember, you do NOT have to have a diagnosed Strep infection to have PANDAS.  Also, feel free to provide them with the link to this blog as I am happy to do whatever I can to help children and families with this condition!

For those who want to help, please see my How Can I Help? post. Thanks so much for your support in increasing awareness of this devastating disease!

1 Comment (+add yours?)

  1. Samantha Gluck
    Apr 03, 2011 @ 09:19:13

    Thank you for visiting my site and linking to my piece about tonsillectomies. Until this moment, I had never heard of PANDAS. I will take some time to read through some of your other posts later today. On the medtopicwriter home page, a button marked “Inspire” takes visitors to the Inspire.com web site where people dealing with rare diseases can gain support and information about them. I also have a rare disease category on medtopicwriter called, Think It’s All In Your Head? Once I educate myself more about this condition, I will write a piece about it and post it there. My thoughts are with you and your family. Sam


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