Congenitalhikids.org
4500 E. palm Valley Blvd ste108/ box# 21
Round Rock , TX 78665
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Brenna, was born at 6 lbs 15 oz at 5:17 AM on a beautiful day in September 2007. She had low bsl's at birth and had some tremors but was misdiagnosed with having an immature neurological system. By the OBGYN's account she was born 10 days early but I knew she arrived right on time. She had the most adorable pudgy cheeks but was very difficult to feed. She didn't seem to prefer formula or breastmilk, slept ALOT and ate VERY LITTLE! When she did eat, she'd spit up most of what she drank. I just felt like something wasn't right. She spent 3 days in the NICU on a dextrose drip and regular bottle feedings. After her bsl stayed above 65 they weaned her off the drip, told me to feed her every 2-3 hours and sent her home with me. I asked if I should get a glucometer and monitor her bsl's but the doctors passed it off as if I were a hysterical, first time mom. Six months later, she had a seizure right in front of me. It was the first one I'd seen and recognized as a seizure. God only knows how many she had that were unrecognized or not seen. Words cannot express how devastating that was!

Which begins our journey. We stayed with Brenna for 2 weeks at hospital in New Jersey but the doctors there couldn't figure out what was wrong with her. I begged them to transfer her to CHOP which is where we should've gone from the beginning! Minutes after being admitted to CHOP they confirmed that Brenna had Hyperinsulinism. Another 2 weeks later Dr. Stanley and his team determined that she had diffuse HI, started Diazoxide, Diuril and Octreotide. The genetic tests that were done there were inconclusive and she responsed so well to the Diazoxide that were confident that she had diffuse HI and called off the PET scan. Brenna was on Octreotide for 3 months. However, she had to be taken off of it because it kept causing her bsl's to skyrocket to dangerous levels and then drop like a stone. Her eating had somewhat improved with her curious palate that began to enjoy solids more than formula.

In the summer of 2010, we successfully weaned her off the Diuril as suggested by her endocrinologist. Her body has been able to regulate her fluid retention issue. She has been on the same 1mL dose of Diazoxide since she was 6 months old and is doing great. Brenna passed her 18 hr fasting study and her Protein Sensitivity results were also negative.

Other than that, my pregnancy was unremarkable with no Gestational Diabetes. However, I did have pre-ecclampsia and thus was induced. I had a normal, drug-free, vaginal delivery. Her diagnosis came to us with much surprise since the doctors that delivered her told us not to worry or monitor her bsl's and there is no family history of Hyperinsulinism in our families. Brenna was a late walker, talker and still can go with out eating unless it was something she REALLY loved like--M&M's and that sort of thing. She is enrolled in early intervention services and has regular PT/OT and Speech Therapy to combat the challenges of her developmental delays. However she is sharp as a tack and is a beauty with a spritely smile on her face with lovely personality. She has the wit, will, charm and humor of a old soul. She's truly our blessing and wouldn't have her any other way!
Copyright 2011 Children Against Hyperinsulinism. All rights reserved.
All Board members donate their time to the Organization.
Congenitalhikids.org
4500 E. palm Valley Blvd ste108/ box# 21
Round Rock , TX 78665
contact