22q Deletion Interest Board: Re: 14yo with VCFS and still getting surprises

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Re: 14yo with VCFS and still getting surprises

Posted by Debbie on 4/23/2006, 12:56 pm, in reply to "14yo with VCFS and still getting surprises"
82.40.234.36

Oh I hear you!!!! I so agree! My son at 11, despite having had open heart surgery at 3 months, was found to have an aretery missing from his heart it is actually attached to his brain!!!He was dx with 22q at 5 but our, then hospital, said there was nothing else going on!! He is now nearly 16 and has developed many bew symptoms in the last few years too!!
--Previous Message--
: I have a 14yo son diagnosed at age 10
: with VCSF and I want to urge all
: parents to insist on a complete
: medical examination for you child. I
: used the facts list of known
: anomolies that occur due to 22q11
: deletion, located on
: www.vcfsef.org, and requested our
: pediatrician to check my son for all
: items listed. In particular, I
: wanted to check my son's kidneys,
: and even though he has never had any
: problems, I wanted to be thorough. A
: simple ultrasound revealed he only
: has one kidney - the left one.
: Please, don't take for granted that
: if a problem hasen't presented
: itself, it doesn't exist. Be your
: child's advocate and give Doctors
: instructions too! Although my son is
: doing fine, I am alarmed at this
: most SIGNIFICANT finding. I thought
: we were past the surprises!
:

Message Thread:

14yo with VCFS and still getting surprises - katsaleo 4/21/2006, 11:42 pm
- Re: 14yo with VCFS and still getting surprises - Debbie 4/23/2006, 12:56 pm
- Re: 14yo with VCFS and still getting surprises - Amy in MI 4/22/2006, 6:10 pm
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--Previous Message-- : Oh I hear you!!!! I so agree! My son : at 11, despite having had open heart : surgery at 3 months, was found to : have an aretery missing from his : heart it is actually attached to his : brain!!!He was dx with 22q at 5 but : our, then hospital, said there was : nothing else going on!! He is now : nearly 16 and has developed many bew : symptoms in the last few years too!! : --Previous Message-- : I have a 14yo son diagnosed at age : 10 : with VCSF and I want to urge all : parents to insist on a complete : medical examination for you child. I : used the facts list of known : anomolies that occur due to 22q11 : deletion, located on : www.vcfsef.org, and requested our : pediatrician to check my son for all : items listed. In particular, I : wanted to check my son's kidneys, : and even though he has never had any : problems, I wanted to be thorough. A : simple ultrasound revealed he only : has one kidney - the left one. : Please, don't take for granted that : if a problem hasen't presented : itself, it doesn't exist. Be your : child's advocate and give Doctors : instructions too! Although my son is : doing fine, I am alarmed at this : most SIGNIFICANT finding. I thought : we were past the surprises! : : :

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