Guest guest Posted March 1, 2000 Report Share Posted March 1, 2000 , We too, fell through the cracks...took us 1 1/2 years for a pick up on the medical issues. We lived outside of Tampa and saw lots of Drs but it didn't come to a diagnosis till we moved to Erie, PA. Went to the opthamologist and he took a look at her and said " has anyone ever told you she could have CHARGE syndrome?? " Never heard of it till that day... I can't rave about the Dr enough!!! I think the Dr in FL should have picked up on the stuff...I am in medicine and know you have to have continuing ed...seems like colobomas is a big tip off along with a floppy ear...HELLO!!!! Enough said.... Quote Link to comment Share on other sites More sharing options...
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