I believe Sandy S still checks in on Facebook with some of the RSD support groups, I forgot the name but its one for parents of RSD kids. Her daughter is doing much better and is in College. She went through so much with her daughter she would have so much insight for you. Also another parent I know who 12 year old daughter Melanie had the gastric pacemaker too. She also has RSD, please try to check out FB support group.