thank you all for responding. most of your letters gave me hope(acouple scared me)but i feel they were honest responses. yes to all the questions(has she been tested for UTI’s, her ped is working closely with them, my daughter is very up on everything needed to be done when the fevers come. sometimes i just don’t know how much more stress  I can take but with help from this site when i need it, i know i will make it.

one more question. my grandaughter was referred last week to a specialist(GYN and plastic surgeon)to discuss reconstruction of her vagina which is fused together except for a small hole near the clitoris. she was referred by her ped md. the SPECIALISTS told my daughter this did not need to be done until she was about 16 yrs old. he also told her "only parents who panic" have this done. my daughter does not agree and their ped md is looking for someone else to refer my grandaughter to.

any thoughts on this issue? i feel for hygeine reasons, if for no other,  the surgery needs to be done. i feel the urine could get trapped inside and cause frequent infections.

 

thanks again,

judy