I have been looking for a cause of my son's odd behaviors since the day
he was born. My son is now 8 years old and after researching Sotos
Syndrome I am fairly certain that this is the cause. Here is my
question. I am currently number 22 on a waiting list to have him seen
by a geneticist. I have been told that if he is formally diagnosed
with this disorder we as a family and my son as he gets older will have
problems getting health insurance. Has anyone experienced this?

Because there is no "cure" and we are already treating his problems;
what are the benefits of having a "formal" diagnosis?