[ Post a Response | 22q Deletion Interest Board ]
Posted by Marlene Orr Link: 22q and You website
on 1/8/2007, 5:16 pm, in reply to "Complete Digeorge syndrome"
68.39.235.147
Hi Emily-
My 10 month old daughter, Kaitlyn, has Truncus type 1 and was born without a thymus gland. She had open heart surgery when she was two days old, had a g-tube placed and had an extra finger removed from both hands (she will be scheduled next month for surgery to remove an extra toe from each foot). Kaitlyn also had hypocalcemia and was on calcitriol and calcium carbonate. However, when she was six months old, the hypocalcemia resolved itself. She is now taking only three meds. When she was first born, we were told to expect the worst, but Kaitlyn has surprised everyone.
I guess what it boils down to is that you should not give up. Kaitlyn is seen at Children's Hospital of Philadelphia (CHOP) - they have the best 22q11 center in the world (even better than Duke). If I were you I would contact the genetics department at CHOP and get a second opinion. People come from all over the world to see the doctors at CHOP - they are currently treating 650 children with this genetic syndrome. I hope this helps. I wish you all the best and please feel free to email me anytime. Thanks!
Marlene
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