April 6, 2025
Nebraska ChitChat Meet Up
In-Person - Lincoln, NE - Saturday, May 17 - 10:00am-12:00pm...
Blog
April 6, 2025
Chicago ChitChat Meetup
Meeting has been cancelled due to personal reasons. We will notify when it has been rescheduled. Thank...
April 2, 2025
Louisiana families fight rare condition
PANS or PANDAS refers to what some doctors call Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It’s an often misunderstood and misdiagnosed disease that...
March 20, 2025
Seizures Linked to Bartonella and Babesia
Imagine a child suffering from seizures, only to discover years later that the cause might be tied to a cat scratch and an insect bite. A groundbreaking case study from North Carolina State...
March 20, 2025
School In-Service Lectures at ASPIRE
Students with PANS/PANDAS have complex cognitive, behavioral, physical & neurological symptoms that affect their school performance. The school's multidisciplinary team benefits from an awareness of...
Bartonella henselae, Babesia odocoilei and Babesia divergens-like MO-1 infection in the brain of a child with seizures, mycotoxin exposure and suspected Rasmussen’s encephalitis
Breitschwerdt EB, Maggi RG, Robveille C, Kingston E. Bartonella henselae, Babesia odocoilei and Babesia divergens-like MO-1 infection in the brain of a child with seizures, mycotoxin exposure and suspected Rasmussen’s encephalitis. J Cent Nerv Syst Dis. 2025 Mar 12;17:11795735251322456. doi: 10.1177/11795735251322456. PMID: 40083671; PMCID: PMC11905044.
- Despite cat and suspected tick exposure, Bartonella henselae and Borrelia burgdorferi serology remained negative.
- Neurodiagnostic testing partially supported Rasmussen’s encephalitis; brain biopsy showed astrogliosis.
- Bartonella henselae DNA was detected in brain tissue cultures.
- Babesia odocoilei and Babesia divergens-like MO-1 were confirmed in blood and brain tissue from 2022–2023.
- Infections, compounded by mycotoxin exposure, created a complex clinical case.
March 10, 2025
The Sibling Experience in PANS/PANDAS: Understanding the Challenges & Needs
Living with a sibling affected by PANS profoundly impacts well-being—fear of outbursts, limited social opportunities, and the isolation of not having the words or knowledge to explain the...
Obsessive Compulsive Disorder associated with Autoimmunity in Youth: Clinical Course before and after Rituximab+/- Adjunctive Immunomodulation
Frankovich J, Calaprice D, Ma M, Knight O, Miles K, Manko C, Hernandez JD, Sandberg J, Farhadian B, Xie Y, Silverman M, Madan J, Strand V, Chang K, Thienemann M. Obsessive Compulsive Disorder associated with Autoimmunity in Youth: Clinical Course before and after Rituximab+/- Adjunctive Immunomodulation. Dev Neurosci. 2025 Mar 10:1-26. doi: 10.1159/000544993. Epub ahead of print. PMID: 40064151.
- Case review (n=23) from Stanford on their use of rituximab for presumed-neuroimmune and severe OCD in youth
- Some (47.8%) experienced transient increases in psychiatric or joint pain symptoms before signs of improvement. The time frame for signs of improvement was 3-4 months.
- 70% achieved full or partial recovery at 1-5 years.
- Receiving adjunct immunomodulation was associated with a higher likelihood of achieving full or partial recovery compared with those without adjunct immunomodulation
March 10, 2025
Accommodations and Educational Supports for PANS PANDAS by Nancy O’Hara, MD
Supporting Students with PANS, PANDAS, and Basal Ganglia Encephalitis: Children with PANS, PANDAS, and basal ganglia encephalitis often require specific school accommodations to support their...
March 8, 2025
Managing Needle Fear: Practical Tips for Blood Draws & Infusions
Needle fear is real, and you’re not alone. Whether it’s a quick blood draw or a longer infusion, anxiety can make the experience stressful. For those with PANS/PANDAS, it may...
March 8, 2025
Mastering the Art of Swallowing Pills: A Step-by-Step Guide
Swallowing pills can be intimidating for many, especially for those with PANS PANDAS due to OCD, sensory issues, anxiety, or difficulty swallowing. The good news is that with some practice...