"Federal officials said it could help treat a rare brain condition called cerebral folate deficiency and that it could benefit "hundreds of thousands" of kids with autism. The announcement triggered a surge of interest among parents seeking the medication, with social media groups popping up with tens of thousands of members sharing doctors' referrals and notes."
""All of a sudden, there's this onslaught of information being disseminated that we now have to explain, disentangle and interpret," said Dr. Shafali Jeste, an autism researcher at the University of California, Los Angeles. "It's a big burden, and we're all willing to bear it - but I think that a lot of it ends up becoming a distraction.""
"Using leucovorin to treat patients with cerebral folate deficiency is not controversial, experts told NPR - and it's been done for decades. But they say that the Trump administration's message about its broader application to autism has created significant debate within the medical community."
Parents of autistic children, including Swathi Balantrapu, have pursued various treatments ranging from evidence-based therapies to costly alternative options. Federal health officials announced that leucovorin, a vitamin B9 derivative used in cancer treatment, could help treat cerebral folate deficiency and potentially benefit hundreds of thousands of autistic children. This announcement generated significant interest on social media, with parent groups rapidly forming to share information. However, major medical organizations pushed back against routine prescription of leucovorin for autism. While leucovorin's use for treating cerebral folate deficiency is established and uncontroversial, the broader application to autism has created tension between clinicians and parents seeking treatment options.
Read at www.npr.org
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