PANS/PANDAS

Brain-HandoutPediatric Acute-onset Neuropsychiatric Syndrome and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus are the names of a little known autoimmune condition in which a pathogen triggers an autoimmune response crossing the blood barrier to the brain and attacking the basal ganglia.  This presents as a sudden onset of psychiatric symptoms in your child.

Imagine that your typically developing child suddenly presents with tics, OCD, or reduced food intake.  These symptoms are paired with 2 or more of the following:  general anxiety, separation anxiety, depression, mood lability, rages, opposition, tantrums, bed wetting, behavior regression, cognitive changes particularly in math and handwriting, sensory issues, hyperactivity, decreased attention, or phobias.  The onset may be literally overnight, or it may come on a little more gradually over weeks or even a few months, but the change is dramatic and noticeable.

As a parent, you know something is wrong, but the doctors don’t know what it is exactly.  They suggest Obsessive Compulsive Disorder, Tourettes, Oppositional Defiant Disorder, Anorexia, Anxiety, Depression and they prescribe psychotropics.  But the drugs don’t help, and in some cases they make it worse.  You keep asking questions and begin researching yourself until you stumble across PANS or PANDAS and it all makes sense.  Now you need to find a doctor who believes this illness exists, is willing to diagnose it, and knows how to treat it.  Those doctors are few and far between.

If this sounds like anything you or a friend has experienced, then go to the PANDAS Network site for detailed guidance in what you need to know to talk with your professionals, get diagnosis, and get treatment.  Additional resources can be found here.  If you need support along the way, contact me directly and I will do what I can to help you.  Leave a comment below or email me, heather@courageousparent.com

PANS and PANDAS are a horrific illness, a dark and isolating illness.  We need to support each other through the healing process.  You can count on my support and the support of other families dealing with this!

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