Well we have decided to go with UCSF and got the referral process started yesterday. The pediatrician in the hospital told us that Stanford would be our best choice for Large Congenital Melanocytic Nevus but when we did some research and talked to people that are on the same journey, we found out that UCSF is one of the top 2 nevus clinics in the country and Stanford really isn't even on the map.
The referral process can take a while and we are anxiously waiting to meet with the dermatologist so that we can have some clearer information specific to Joshua and what our options are to help him.
The internet never ceases to amaze me as far as the number of resources that we have at our fingertips for pretty much anything. One resource that we found that has been a big help in helping us understand Joshua's CMN better and connecting us with families around the globe that have children with CMN, is the site http://www.nevus.org/. The people that we have met though them already are extremely helpful and knowledgeable and have helped put us at ease with Joshua's condition.
One of the things that they have on their site is a map that shows how uncommon large CMN is and soon there will be a green dot over Modesto.
Posts
No comments:
Post a Comment