“…A 14-year old with sudden onset of OCD so severe he can’t ride in a car. An 8-year old who restricts her eating so severely she is hospitalized. A loving 4-year old who is now so full of rage she has been kicked out preschool. A 12-year old who has been in and out of psychiatric facilities but never improves despite numerous treatments and therapies.”
These are just some of the stories of PANS and PANDAS and the impact of this intense and frightening disease for children and their families.
PANS and PANDAS are infection-induced autoimmune conditions that disrupt a patient’s normal neurologic functioning, resulting in a sudden onset of neuropsychiatric conditions, though onset can also be more gradual in PANS patients.
PANS stands forPediatric Acute-onset Neuropsychiatric Syndrome, and is triggered by Lyme, mycoplasma, mold, upper and others. PANDAS is a subset of PANS and stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection, specifically group A strep. Although the etiology for PANS is different from PANDAS the symptom presentation is nearly identical.
Nearly 25 years after Dr. Susan Swedo of the National Institute of Health first characterized it, clinical recognition of the link between infection and neuropsychiatric symptoms is finally improving. Today, more and more alert practitioners, parents, teachers, and caregivers are recognizing symptoms which creates better outcomes for children.
In fact, according to Stanford Children’s Health; “For children who are diagnosed early and a cause has been identified, the prognosis can be very good. Some patients respond quickly and are back to 100-percent normal function.”
However, this is only beginning to happen, leaving far too many children to suffer unnecessarily and for far too long, as Owen did.
This book was written not only to help children like Owen know that they are not alone, but also to help raise awareness so no child is forced to endure this devastating disease one day longer than necessary.
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