re: Retro-grade genitogram
Oct. 21st, 2002   12:14am

Radiographic diagnostic imaging begins with an abdominal and pelvic ultrasound to assess for a uterus and intra-abdominal or intrainguinal gonads.

A slightly more invasive imaging study is the genitogram, which consists of inserting a small feeding tube catheter into all perineal orifices. Radiopaque contrast material is gently instilled, and the urethra or urogenital sinus and vaginal introitus are visualized. On occasion, an endoscopic evaluation of the urethra or urogenital sinus is needed. Rarely are laparotomy, laparoscopy, or gonadal biopsy needed for a definitive diagnosis. 

Wow - if you let them do this - will that need to put her asleep? BE SURE they give solucortef in the IV before, during and after.... or she can die from adrenal crisis.

I cut this out of an article... that briefly refererenced CAH but more on other sexual problems.  CAH is know by the 17-OHP or hormonal levels - so I am not sure WHY they need to do more testing and diagnosis.  I would recommend Dr. Maria New at Cornell University of DNA testing to confirm CAH type that you and your husband carry  - so with your next pregnancy - you know the type of CAH.  There is simple virilization and classical CAH and other types of CAH. You should be sure of the type your daughter has or confirm it with genetic testing (it is just a blood sample  that is taken locally and mailed to New York  - Dr. Maria New’s office).

  Be sure you have a good doctor for the surgery.  Some doctors are thrilled at TRYING to operate.  I would be sure the doctor has done CAH surgeries and SEVERAL of them.  Ask them for references. 

Better yet - don’t rush into surgery until you find a EXPERT doctor!!!  CARES  - www.caresfoundation.org can help you.  Kelly Leight is the founder and a mother of a CAH daughter.  Also she can tell you about free medical assistance (travel assistance) for the surgery!  Go to the BEST doctors!! This is something you want done RIGHT.  And right the first time!!

roberta

 

roberta
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