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health2h ago
‘I hate you! I want a different mom!’ He is getting bigger, I have to physically restrain him.’: Mom says son’s childhood has been ‘violently stolen’ due to PANDAS/PANS diagnosis, ‘It’s sad, unfair, heartbreaking’
- Latest development: the family pursued new medical plans after PANDAS/PANS diagnosis confirmed by a pediatrician.
- Who/What: the mother describes years of trying multiple ADHD meds with little effect before reconsidering diagnosis.
- When the diagnosis shifted, the family pursued a new plan including antibiotics and possible IVIG for the child.
- Where/When: the family sought specialists in New Jersey and Washington DC and adjusted treatment timelines in 2018–2019.
- Why: the mother notes the diagnosis helped reframe the child's treatment and family planning.
- Introduction of family-wide actions: planning germ removal, steroids, and caregiver testing to identify carriers.
- Impact on siblings: other children in the family are affected by the caregiving demands and changes in routine.
- Emotional toll: the mother describes exhaustion, fear, and hope as the disease evolves.
- Outcome: the family remains hopeful about new treatments and continued care.
- Closing sentiment: the mother frames the experience as a painful but empowering journey.
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