ASPIRE Blog

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 It was a little strange that she had such a strong reaction, and afterward, she was withdrawn.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.

I was so relieved to have a diagnosis that made sense finally, which gave us the hope of treating and recovering our son.

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 […]

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.

Lyme disease research study enrolling now.

ANS PANDAS impacts the physical health of a student and causes psychological, neurological, behavioral, and developmental difficulties.  Learn more about PANS PANDAS at School.

If uncontrollable thoughts, fears, and other behavioral changes are taking over your child’s life, Learn About PANS PANDAS.

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 […]

Overview – of PANS/PANDAS Symptoms, Diagnosis, and Treatment. For more in-depth information, please see the www.aspire.care website directly. Share directly from this page or download it to email or print.

ASPIRE PANS PANDAS Current Resources for General Pediatricians. Share directly from this page or download it to email or print. Or contact us if you would like us to directly email your doctor or provider.

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.

Study To Compare The Effect of Panzyga Versus Placebo in Patients With Pediatric Acute-onset Neuropsychiatric Syndrome. This will be a double blind placebo study of IVIG for PANS/PANDAS.