We were actually exploring CHoP or NIH but NIH won’t take them currently because they don’t have an open pediatric study going for MCAD/S. They are both set up as patients and registered at NIH, in case they get funding for a study and fit the criteria of taking them in. CHoP told us when we were ready, pack our bags and prepare to be there for a minimum of 2 weeks.. It is just hard, having 2 other kids that won’t understand why they can’t go home, missing school, Hubby upset he won’t be able to see us, etc..
We are trying to find someone that will bring them in and just do tele-Health inbetween massive visits. We were actually looking at a few doctors, one is in NY, another is in Louisiana and the other is in Texas.. All three come very highly recommended. It all comes out of our pocket though, flights, accommodations, and even co-pays because our secondary insurance doesn’t cover out of state doctors...