We had a surprisingly positive experience yesterday at a local EB Clinic! I was skeptical based on the recent interactions we have had with local doctors, but this was much better. We also got to briefly see another EB family when we were arriving! We saw a GI doctor, a nutritionist, and the derm. team. With the first two we discussed different ways to try to get more formula in during the day so that we can cut back at night, as Raul often spits up in the morning. We also talked about his reflux medicine; that it is best given on an empty stomach, and that it becomes less potent after 21 days. He will continue to see his regular GI doctor, but this team can consult if needed.
With derm. we spent a lot of time going over all his history, his most pressing issues, and how we do bandages. We talked about doing Apligraph on his wounds that haven't healed since birth, and hopefully we will be doing that in May. They are going to talk next week to some of the other EB specialists around the country to come up with an antibiotic regimen to use through the process. In the meantime we are going to continue his Bactrim until they make that decision, as we don't want to lose ground on the improvements/cleanliness the antibiotics have helped with. We also talked about his legs in general, and we may do an orthopedic consult about his painful knee and to address his ankle contractures.
At the end they also told me about some future trials their hospital will be involved with, so I am interested to hear more when those get closer! This hospital is further than our regular hospital, but it will be worth it if they will do more to help Raul! And hopefully when we are inpatient they will be able to consult by phone so we don't end up dealing with the same issues we had last time!