From a Washington parent
Our daughter has had a complex medical history since birth. She then had acute mental health and behavioral changes; the key word here is acute. Despite prolonged psychiatric intervention—including Cognitive Behavioral Therapy, Dialectical Behavior Therapy, Exposure and Response Prevention, parent coaching and training, etc.—her mental health and behavior continued to worsen over time; they never even stabilized, just continued to get worse.
Despite saying for over a year “things are getting worse,” we were told by multiple providers that it was “just anxiety.” We were offered endless parenting books, parenting classes, medications, etc. She then fell off the edge and missed 16 months of school. It turns out she had brain inflammation caused by an illness. A simple course of antibiotics reduced her symptoms drastically. But the damage is permanent. A two-year delayed diagnosis and treatment has irrevocably harmed our daughter and family.
Because she had a complex medical history, we were not believed. We were told primarily it was anxiety from the complex medical history. We were never believed. And then when the proper diagnosis came, there was no holistic service to help us. She has multiple different providers scattered all over the region. Only a handful of providers are willing to accept that the brain (mental health) is connected to the body (physical health).
If I could sum everything up: there needs to be rapid and widespread change in how mental health is assessed and treated. There needs to be a holistic look at each person. The psych providers need to stop separating mental health from physical health. Part of a mental/behavioral crisis assessment needs to include recent medical history and labs to assess inflammation, autoimmunity, and infectious status.
