Where are you from?  If you are in the USA insurance carriers should not be excluding people from coverage permanently due to a pre-existing condition it is against the HIPAA laws.  They may make him wait a certain amount of time before covering him…but they should not be indefinitely excluding someone due to a condition.  Our son was diagnosed as Sotos-like and to date we have never been asked about his condition with regards to insurance even when switching carriers.  My son is only 6 years old.  They may try to charge a higher premium for private insurance…but to my knowledge, if he is under a group plan or an employer plan he or you would pay the same as any other person in the group.  (I worked at an insurance company for 11 years.)  Also, individuals have a normal life expectancy.  The other thing a formal diagnosis would be helpful for is his future offspring…that is if he is capable of getting married and having kids...some are high functioning and some are low functioning so I guess the importance of that depends on the individual and what the future may hold for them.  The reason I say this is a person with Sotos has a 50% chance of each offspring being born with Sotos Syndrome.  So each pregnancy has a 50/50 chance of getting the mutated or deleted Sotos gene.  A formal diagnosis can also help with school if they are not giving him what he needs to succeed then having a diagnosis or a cause can work to you advantage.  Don’t know if this info was helpful or not!  You might want to post this question to the Sotos group on Yahoo…there are a lot of members there and they would be willing to share their experiences.  I am a member of both groups.  The site is http://health.groups.yahoo.com/group/Sotosyndrome

Pam    

-----Original Message-----
From: UndiagnosedOvergrowthSyndromes@yahoogroups.com [mailto:UndiagnosedOvergrowthSyndromes@yahoogroups.com] On Behalf Of cschulz1234
Sent: Tuesday, August 30, 2005 7:41 AM
To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
Subject: [UndiagnosedOvergrowthSyndromes] 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?