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
Beaming with hope 