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Posted by sarah --Previous Message--
on 5/30/2007, 2:13 pm, in reply to "Complete Digeorge syndrome"
72.209.159.33
Hi my name is Sarah. My 16 month old son has DiGeorge Syndrom. I don't know the difference between the partial and complete. But my son is lacking the immune system, doesn't have a thymus gland, had tetralogy of fallot. None of my doctors have knowledge of DiGeorge Syndrom. So I'm not getting any answers. They only stuff that I've found out about it is from the internet. Most of the time my mom and I have to tell the doctors what is going on. Please get in contact with me.
: Hi My name is Emily and I have a three
: month old son with complete Digeorge
: syndrome. I am having complications
: in finding anyone to talk to that
: has a child with the same problems.
: I know of quite a few whose children
: have partial Digeorge, but from my
: understanding only a small few are
: considered complete. My son has
: tetralogy of fallot and a total lack
: of immune system. This has caused us
: a great deal of issues. He also has
: no parathyroid glands which cause
: him extreme hypocalcemia. We just
: brought him home from the NICU last
: week and he is on thirteen
: medications along with a feeding
: pump. In January we are going to fly
: him to Duke University Hospital to
: have a thymus transplant. The
: doctors are also going to take
: either my husband or my parathyroid
: and transplant that also. They
: mentioned to us that if this does
: not work he will die before the age
: of one. I was wondering if anyone
: else has experienced any of these
: extreme issues. My husband and I are
: in our mid 20's and would just like
: someone with the same issues to
: correspond with. Feel free to
: contact me anytime.
: Emily
:
:
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