My daughter was diagnosed Salt-Wasting Adrenal Hyperplasia at birth. I went full-term and it was a vaginal delivery. They knew something strange was up when they saw her ambiguous genitalia. My OBGYN was very vague in telling me what was going on. She was born at 3:4
[More]0pm and finally got a pediatric endochrinologist to came and see us at midnight. He stayed, answered all of my questions and happened to study under Dr. New at John Hopkins University (who specializes in CAH). We were blessed to have him know what she had because in 2002, neonatal testing was not done to test for CAH, so a lot of SIDS babies died within 9 months due to this life-threatening condition.They made sure she was able to urinate and make sure her chromosomes came back XX . After 2 weeks old, I was transferred to a Children's Hospital due to a GI bleed,which is a side effect of being given cortisone intravenously. I was strictly breastfed for a year with some organic rice cereal. She threw up a lot, and has always had a bad gag reflex to this day. Depressed and discouraged (hormonal.) She take Florinef, Cortef, Diamox (for recent Psuedotumor cerebri) Synthroid for Primary Hypothyroidism diagnosed at age 3. I am doing a lot of reading and trying to pull together all the common threads that could be helpful for my seven year old darling. She became morbidly obese at age 5 but has recently maintained 98-100lbs after dosage changes in her steroids. We have a program called Trim Kids and are in desperate need of support. Any kind of support, people who have kids similar to Gabs' , or doctors , nutritionists, any medical advice is extremely appreciated and I always check up on reliable findings.
8/14/2011- Since going to Dallas Children's Hospital and the National institute of Health in Maryland, I have been able to get my daughter back to feeling a lot better. God bless all you have who have helped us. She still has some anxiety and fatigue and headaches, but nowhere near the pain she was in from December 2009 to April 2010. Lots of weird findings, but facinating and I love the people we have met along the way.
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