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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist


Feb 9, 2022

Today’s guest, Elizabeth, had never heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection) when her son was diagnosed with it. PANDAS is a tough diagnosis, because some doctors believe in it while others do not.  Having a child with this diagnosis that only some doctors believe in is incredibly hard to navigate, to say the least.  PANDAS is an autoimmune disease closely related to infections, so you will hear Elizabeth talk a bit about how her son’s ear infections seemed to lead to PANDAS.

Elizabeth also shares her thoughts about how society does not judge kids with colds, cancer, or appendicitis, but society tends to look down on you when your child suffers from neuropsychiatric symptoms.  There are misconceptions that these symptoms are related to bad parenting, violence in the home, poor role models, lack of discipline, or just being a “bad child”.  Parents of children with PANDAS have a lot to carry on their shoulders, and I am so glad Elizabeth is here to share her story.

In this episode, we talk about…

[2:46] Elizabeth’s family and background

[5:17] Elizabeth’s son’s first symptoms of PANDAS

[9:01] Getting the diagnosis of an acute onset of PANDAS

[12:33] Being discharged from the hospital 

[16:28] More strep, different symptoms

[23:38] Juvenile court and the path to treatment

[33:58] Searching for the source of PANDAS with medical testing

[43:58] How Elizabeth’s son and family are doing after medical treatment

[45:09] Elizabeth’s book: What’s Wrong With My Child?

Connect with Elizabeth:

Website

Book: What's Wrong With My Child?

 

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

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