ASPIRE Blog

Do I have patients with Lyme triggered PANS?  Do I have patients whose Lyme does not trigger PANS symptoms but does exacerbate the severity of pre-existing conditions or make it more difficult to recover and get back to their baseline?

In terms of neuropsychiatric symptoms, there are case reports in the medical literature, showing kids who have a PANS presentation who received immunomodulatory treatment, steroids, psychiatric medications and did not get better. Then they test for Bartonella, the test is positive and they treat appropriately, and the child returns to baseline after a year and half of being in a flare.

Bartonella can cause symptoms that look like autoimmune encephalitis or PANS without actually triggering autoimmune encephalitis and it can also trigger autoimmune encephalitis.

Chan, A., Karpel, H., Spartz, E. et al. Hypoferritinemia and iron deficiency in youth with pediatric acute-onset neuropsychiatric syndrome. Pediatr Res 89, 1477–1484 (2021). https://doi.org/10.1038/s41390-020-1103-3 Conclusion: Hypoferritinemia and iron deficiency […]

What a year! Thank you for being a part of ASPIRE’s first year. We believe in the power of WE; it takes an entire community to fight for better outcomes for those affected by PANS/PANDAS.

ASPIRE is happy to announce that New England Center for Health, lead by Dr. Nancy O’Hara (ASPIRE Professional Advisory Board Member), Dr. Lindsey Wells, and Vicki Kobliner will host zoom calls regarding various topics surrounding COVID-19. 

Alexandra B Maulden, Aris C Garro, Fran Balamuth, Michael N Levas, Jonathan E Bennett, Desiree N Neville, John A Branda, Lise E Nigrovic, for Pedi Lyme Net, Two-Tier Lyme Disease […]

Do you remember the day your child officially got a diagnosis of PANS/PANDAS? Was it your first doctor? Was it your fifth? Were you devastated? Were you relieved to have an answer and the start of a treatment plan? Was your child diagnosed incorrectly prior to that? Email us at ASPIRE us your Diagnosis Day Story.  Or submit your full Personal or Family PANS PANDAS Story.

Dr. Swedo briefly explains the importance of this research and its results. 

The Frontiers article is an important replication and extension of previous work by Dr. Madeleine Cunningham and her colleagues. The investigation reports results of assays done on samples obtained from 60 PANDAS patients, 8 children with Sydenham chorea, and 2 “control” groups — children with other psychiatric/neurologic disorders (25 with OCD, 18 with attention deficit hyperactivity disorder (ADHD) and 18 with Tourette disorder), and 28 healthy controls. 

Lyme ­­is it Affecting My Child? You Bet Your Rash & Other Signs, Symptoms, and Treatments Nancy O’Hara, MD, MPH, FAAP, a member of the ASPIRE Professional Advisory Board, presented […]

Chain Jennifer L., Alvarez Kathy, Mascaro-Blanco Adita, Reim Sean, Bentley Rebecca, Hommer Rebecca, Grant Paul, Leckman James F., Kawikova Ivana, Williams Kyle, Stoner Julie A., Swedo Susan E., Cunningham Madeleine […]

I guess my advice for a PANDAS family would to always be there for your sick child. To always tell them that they are brave. Because we are. There may only be 1 in 200 of us, but we are the bravest people on the earth 🙂

My name is Ella and I was diagnosed with PANDAS at age 13, now 15. Before PANDAS I was a four-sport athlete (basketball being my favorite), I loved hanging out with friends and family, I was doing good in school, and I was your normal teenager.