So October is dysautonomia awareness month. This is one of Addysons biggest issues currently. This is why we see AADP (aquired autonomic dysfunction program) at chop. The AADP program has been helpful. It helped us get her the g tube that was needed to help hydrate for her pots. It has helped us see her whole team in one day every few weeks. It has allowed us to get her entire team on the same page. There is one dr, a complex care dr who oversees all the drs and their plan to make sure the whole team agrees and implements the plan moving forward. Addysons pots is way more controlled today than it was before due to her AADP team. We still have major dysmotility throughout her small intestine We still have seizures. We still have dizzy spells and tachycardiac spells but they are better than they have been in years. We are still constantly making changes at each appointment, striving for a better quality of life but we are confident that our team is working together to get us there. 3liters a day is ideal fluid intake for Addyson and the g tube makes that possible. Nutrition is a major focus right now due to her gi dysmotility and the fact that we have to hydrate at such a high volume.
Beaming with hope 