In a poignant session on May 28, 2025, the Louisiana Senate Insurance Committee convened to discuss critical health issues affecting children with autoimmune disorders, particularly PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The testimonies shared by parents highlighted the urgent need for legislative support to improve access to necessary treatments, which can be prohibitively expensive.

One mother recounted her daughter’s sudden decline in health, which began with uncontrollable tics and escalated to severe neurological symptoms, including hallucinations and paranoia. After a misdiagnosis, a pediatrician recognized the connection between her daughter's previous mycoplasma pneumonia and PANS, leading to a treatment plan that included high doses of antibiotics and intravenous immunoglobulin (IVIG). The mother emphasized the emotional toll of watching her daughter struggle, stating, “I missed my daughter,” and underscored the importance of financial support for families facing similar challenges.

Another parent shared a heart-wrenching account of her son, who experienced a drastic change in behavior following a severe strep infection. Misdiagnosed multiple times, the family faced a long and arduous journey through various treatments, including repeated courses of antibiotics. The mother expressed her desperation, stating that they were considering financial sacrifices just to afford IVIG, which could restore her son’s health. “It is so heartbreaking not being able to see my child be his normal self anymore,” she lamented.

The testimonies underscored a broader issue: many families are unable to afford the necessary treatments due to high out-of-pocket costs. The parents called for legislative action to ensure that all children have access to effective medical care without the burden of financial strain. The committee's discussions highlighted the need for increased awareness and support for these conditions, which are often misunderstood or overlooked in the medical community.

As the meeting concluded, the urgency for legislative change was palpable. The parents' heartfelt pleas for assistance reflect a growing recognition of the need for comprehensive healthcare solutions for children suffering from PANDAS and PANS. The committee's response to these testimonies will be crucial in shaping future policies that could alleviate the struggles faced by countless families in Louisiana.