Maybe you’ve known in your gut, something is off. Maybe you haven’t noticed, but your pediatrician has concerns about your child’s development. Or maybe you’ve received a diagnosis of developmental delays. Where do you start?
We’ve been there. Even with the top doctors in Los Angeles, it was still incredibly challenging to navigate our daughter’s diagnostic journey. We went from “global developmental delays” to “cerebral palsy” to “Leukodystrophy” and eventually settled on “metabolic disorder.”
It took my husband and I, both with doctorate degrees involving research, almost two years to find an actual likely diagnosis (we are still in the process of confirming) from the time our daughter started missing certain milestones.
Specialists were constantly surprised at how quickly we found them, telling us it took other families several years to get where we did in a few days. We were baffled. But it made sense, we had the top medical teams in the country, and we were both highly-trained researchers. We also had super supportive employers, generous work leave policies, and flexible work schedules. Of course it would take others longer to find answers.
We found that, in many cases, and like ours, parents effectively “diagnosis” their own children because our health care system doesn’t support this journey for parents. That’s why we created From Delays to Diagnosis.
We can support each other through this journey. By connecting and pooling our experiences, research, and resources, we can help each other find diagnoses more quickly, prolonging and potentially saving our children's lives.