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Anna D. | Kansas | Patient Ages: 4 and 6 | Disorder: Propionic Acidemia

The shutdown has made us very anxious. Our DME, thankfully has been well stocked and we have not had to switch over yet, but we do have the recipes ready for when it does come down to that. Our two girls are sensitive to changes to their formula. I worry that the new formula will disagree with them, and have to head into the ED due to excessive emesis, causing dehydration. Then we would wait, who knows how long to be seen in an over crowded ED, to get hooked up to an IV for fluids (saline then D10). There they would also check labs to make sure numbers weren’t completely out of wack. And when they stop throwing up, to start up feeds again, get them up to a decent rate on their feeding pumps. Being a metabolic parent is stressful enough without the idea of running out of my daughter’s formula.