Monday, January 9, 2017

Our Stories Matter: PANS/PANDAS Awareness

Originally published on December 17, 2016.

I love this kid so much. He is brave, kind, joyful, witty, and creative. He loves to build and create, and he could spend all day making gifts for people year-round. He loves to laugh. But many days his brain and his body make it hard for all that to shine through. 

He has PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). PANS and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) are when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, rage, impulsivity, focus concerns, severe restrictive eating, anxiety, tics, personality changes, decline in academic abilities, sensory sensitivities, and more.

Some children suffer debilitating flares while others function enough to continue to go to school but not remotely at the same functioning level. Symptoms may relapse and remit, and the treatment itself may exacerbate symptoms. For many, my kid included, it takes years to get a proper diagnosis and treatment. The research surrounding PANS and PANDAS is growing, and as information grows, more kids are getting accurately diagnosed and treated.

Just as I share our story as a family with a transgender child, I will share parts of our story as a family with a child with PANS... because our stories are bridges to awareness, empathy, connection, and support... and because if I can help just one family whose child is struggling with this, whether they know it or not, it will have mattered.

#ourstoriesmatter #pansandpandasawareness#loveandgrace

Additional Information:

Girl's serious disease may have started with strep
New England PANS/PANDAS Association

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