We are learning my son has a rare endocrine disorder, and none of the pediatric endocrinologists in my state specialize in it, or are really that familiar with it at all. We’ve tried to make do, but the final straw was finding out this week his doctor neglected to test for something, that had he continued his treatment, it could have killed him. My personal research is the only reason the test was performed.
Some of the bigger children’s hospitals in other states have entire departments dedicated to caring for this condition. I know that you can request an out of network exception if there are no providers in network for the specialty you need. Does something like that exist for when no providers in your state can provide the care you need?
I’m getting desperate. 🥺
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