Aadp follow up

Today we had Addysons aadp follow up appointment.

Here is what we know:

  • Her weight is steady, no improvement, slight decline (55.13 to 55.5).
  • Her team thought her color looks way better (we agree).
  • They agreed that the mito cocktail and calcium protocol will stay the same
  • We are making a slight change in her flagyl med protocol and adding a new med (Simethicone).
  • One of her meds causes long term bone and joint issues so we are trying to see if we can decrease it slightly. (Fingers crossed).
  • No repeat manometry for at least a year
  • From the mouth of her gi — we need to give her time to focus on school and for her to stay stable for a year and honestly we need to see if she can stay healthy for a year. If so we can discuss repeat manometry
  • Chop does not want elective procedures happening (apparently starting today they are requiring eye protection for drs and nurses).
  • Nutritionist is speaking to team about adding in an overnight feed

We also went over her medical history in her chart. All the below were noted.

  • Congenital malformations of intestine
  • Epilepsy – focal/partial
  • Periodic fever syndrome
  • Abnormal ekg
  • Enlarged heart
  • intestinal obstruction
  • disease of the digestive system
  • Spinal cord abnormalities present at birth
  • Inflammation of the esophagus
  • Funnel chest
  • Slow transit
  • Neutropenia
  • Familial non neuropathic amyloidosis
  • Autonomic nervous system disease
  • Tachycardia
  • Mitochondrial metabolism disorder
  • Anemia of chronic disease
  • Acquired absence of the digestive track
  • Peripheral vascular disorder

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