AwareNow: Issue 20: The Kind Edition

Page 57

EXCLUSIVE INTERVIEW WITH LYDIA WORTHINGTON

BEARABLE

A PARENT’S STORY OF BEARING WITH PANDAS When most people hear ‘PANDAS’, they think of bears. When Lydia hears it, she thinks of Asa, her son. Asa has pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, commonly referred to as PANDAS. Strep throat is a common childhood illness. Some kids get it again and again, and a simple round of antibiotics usually clears it up. But for a small number of children, the infection triggers strange behavior changes known as PANDAS syndrome. Here is what you don’t know about what you didn’t know.

Allié: For those hearing about PANDAS for the first time, please share your experience with Asa. What were his symptoms that led to diagnosis? How is it being treated?

Lydia: With PANDAS it’s hit or miss. Some kiddos suffer for years and years and are unable to fully recover. We were so blessed Asa has a more “mild case” of it beginning when he was 4. He was diagnosed with strep, and we treated it accordingly with a round of antibiotics. We thought it was taken care of, but it turned to Scarlet fever. He was non functional and highly volatile in the beginning. Lost his speech and ability to be reasoned with at all. Not only viciously physical with our household, but with his closest friends and teachers. Head butting teachers and pushing friends off the high slide ladder backwards. Throwing his urine soaked pull ups at my face. Very scary times and unsure if he would be kicked out for good and forever doomed to being “a bad kid”. Him saying “my brain is giggly when I do homework and when I hit my head. Sometimes my brain comes out this ear when I hit my head. I have mad hands and my brain is giggly”. These are scary things to hear from a 5 year old. We have gone to so many specialists and had so many tests done, functional MRI’s, tons of bloodwork, allergy tests, psychology and neurological consults, etc.

BEARABLE

EXCLUSIVE INTERVIEW WITH LYDIA WORTHINGTON

57 AWARENOW / THE KIND EDITION

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