Thanks....we finally have a date for the genetic testing. I am
nervous but I so much want to know why my son is the way he is.


--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Pam"
<pamlepro@c...> wrote:
> 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?
>
>
>
>
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