In Lee’s Summit, Missouri, cases of strep throat are on the rise, reaching a 20-year high, according to data from the Centers for Disease Control. This common bacterial infection primarily affects children, causing inflammation in the throat and tonsils. While most children recover from strep throat without complications, it can lead to serious conditions, such as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).

A Mother’s Fight for Her Son’s Health

Annie Steil, a resident of Lee’s Summit, endured a two-year battle to secure proper care and coverage for her son, Colton. Initially misdiagnosed with ADHD, Colton’s symptoms worsened, prompting Annie to seek further medical attention. Eventually, Colton was diagnosed with PANDAS, a condition where the body’s immune system mistakenly attacks the brain tissue in response to strep infections.

Understanding PANDAS

Dr. Alex Nelson, Colton’s neurologist, explains that PANDAS manifests as sudden and severe behavioral changes in children, often following a strep infection. The disorder affects approximately 1 in 200 children, according to estimates from the PANDAS Network. Treatment typically involves intravenous immunoglobulin therapy (IVIG), which can be costly, ranging from $5,000 to $20,000 per round.

Financial Challenges and Insurance Coverage

Despite the effectiveness of IVIG, many families face financial barriers to accessing this treatment. In states where IVIG coverage is mandated, families have greater access to necessary care. However, Missouri and Kansas do not currently require insurance companies to cover PANDAS treatment, leaving families like Annie’s to navigate coverage denials and financial strain.

Advocating for Change

Dr. Nelson emphasizes the importance of advocacy in securing insurance coverage for PANDAS treatment. He encourages families to engage with lawmakers to push for policy changes that would ensure access to essential care. Meanwhile, Annie’s persistence led her to explore alternative options, including participating in a drug trial in Colorado to access IVIG for Colton.

A Heartbreaking Struggle Continues

Despite initial improvement, Colton’s condition relapsed, leaving Annie grappling with the emotional toll of her son’s illness. The family faces ongoing challenges as they seek effective treatment and navigate the financial burden of Colton’s care. Annie’s coworkers have rallied support through fundraising efforts, highlighting the community’s solidarity in supporting Colton’s journey to recovery.

Conclusion: Seeking Solutions Amidst Struggle

Annie Steil’s journey highlights the challenges faced by families navigating the complexities of healthcare, particularly in accessing specialized treatments like IVIG for PANDAS. As communities come together to support individuals like Colton, there is a collective call for greater awareness, advocacy, and policy changes to ensure equitable access to essential healthcare services.

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