I am going through the process of trying to find a new health insurance for my family and it is really hard to get accepted when your child has a pre-existing condition.  It would not make a difference with or without a diagnosis as they ask direct questions about doctor visits and reasons for any non routine visit.

I do get Childrens special health care services because Steph has a Cerebral Palsy diagnosis and she did not qualify until she recieved the formal diagnosis.  That is really helpful eventhough it is not quite accurate.  We are still searching for the real cause of her cognitive delays but are not frantic about it, it would be nice to have a name for it and to know for my other children if it is genetic.

Michelle

Message: 1
Date: Tue, 30 Aug 2005 12:40:52 -0000
From: "cschulz1234"
Subject: Is there any benefit to a diagnosis?

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?