A Long Slow Road to PANS PANDAS Recovery

A Long Slow Road to PANS PANDAS Recovery

Published: Oct 22, 2020   |   Author: Gabriella True   |   Category: Blog, Featured on Homepage, Personal Stories   |   No Comments

Around 4th grade, Sylvie was at a friend’s house, and I received a call that she wanted to come home. She was scared as she had seen something upsetting on TV; turns out it was a cat that had fallen from a roof and broken its leg. It was a little strange that she had such a strong reaction, and afterward, she was withdrawn. Soon after, Sylvie came home from school and said she could no longer eat because she was afraid of choking and dying. She loved food and, prior to this, ate with gusto. We struggled and cajoled her into eating; the whole family got involved, and after about two weeks of extremely slow eating and chewing, she got back to somewhat normal.

Read more
PANS Patient Story – PANS PANDAS Can Start as an Eating Disorder

PANS Patient Story – PANS PANDAS Can Start as an Eating Disorder

Published: Oct 8, 2020   |   Author: Gabriella True   |   Category: Blog, Family Quotes, Featured on Homepage, Personal Stories   |   Tags: , , ,   |   5 Comments

PANS PANDAS Can Start as an Eating Disorder Note from ASPIRE: This is a must-read PANS PANDAS Patient Story. A typical happy young girl develops a severe eating disorder and other PANS PANDAS symptoms; then, she suffers through years of hospitalizations before her mother finally reads about PANS PANDAS. Even after diagnosis, it was an […]

Read more
The Wall Was Hard to See

The Wall Was Hard to See

Published: Oct 3, 2020   |   Author: Gabriella True   |   Category: Blog, Featured on Homepage, Personal Stories   |   No Comments

This story exemplifies how it is sometimes hard to see the sudden onset or sudden worsening of PANS PANDAS symptoms as you are living (struggling) through it. Remember, someone with PANS PANDAS does not need to be 100% free of all symptoms, behaviors, delays, etc. before onset; symptoms can pile up. The boy featured in this story had several challenges prior to diagnosis. Hence, as his parents, providers, and educators kept trying new therapies, seeing gains then seeing the loss of those gains, it was hard to see the big picture and identify those periods of sudden onset and sudden worsening of symptoms. It was not until medical issues in his sibling were identified, including Bartonella, strep, and mycoplasma, was PANS PANDAS considered. Then the pieces fell into place, and it was easier to see when he had hit walls – i.e., when he had periods of regression and sudden worsening of behaviors.

Read more
Virtual Voices for Mental Health: An Online Day of Action

Virtual Voices for Mental Health: An Online Day of Action

Published: Sep 17, 2020   |   Author: Gabriella True   |   Category: Blog, Families, Parents, & Caregivers, Featured on Homepage   |   No Comments

ASPIRE is so happy to announce that we are participating in this year’s Virtual Voices for Mental Health: An Online Day of Action, and you’re invited! Hosted by the International OCD Foundation as part of OCD Awareness Week, Virtual Voices for Mental Health: An Online Day of Action includes an evening of live programming and […]

Read more
School Nurse Role & Information Packet

School Nurse Role & Information Packet

Published: Sep 2, 2020   |   Author: Gabriella True   |   Category: Blog, Featured on Homepage, Printables & Brochures, Schools & Educators   |   Tags: , ,   |   No Comments

School Nurses play an integral role in the health of students. School nurses support students and student health every day of the year. Children with PANS/PANDAS have complex physical and mental health conditions that benefit from the support of a school nurse. Share directly from this page or download it to email or print.

Read more