Meet JC

I would like to introduce myself, my name is JC. I am the youngest of three with two older sisters, Becca 6 and Marisa 5. I was born in June 2008 and weighed in at 8 lbs 12 ozs at only 37 weeks. I arrived via cesarean section after a long and unsuccessful labor, but my mom says it was all worth it. She knew right away I had quite the appetite because I would nurse every 1-2 hrs and my appetite never seemed to decrease even when baby food was introduced. But even still we learned that food could only do so much to silence this disease lurking. On what appeared to be a typical Friday morning, only days before I turned 9 months our lives changed forever

That morning I awoke early and nursed like I always did while my sisters got ready for school. Then in an instant my body went limp and I began to have a seizure. My mom cradled me in her arms as I turned blue. She called 911 and after six minutes I regained color and slowly started to respond. My mom says it felt like an eternity.

During the EMS ride to hospital I continued to have absent seizures, where I would stare off into space. Doctors and nurses checked me out and everything appeared okay until the lab work came back that revealed a glucose of 33. Figuring it is was an error a fingerstick was done and it also was critically low. Things happened so quick after this. I received bolus after bolus of IV dextrose only to have my sugar drop back to the 20s and 30s within minutes. Over the next week I charmed so many doctors and nurses with my deep dimples and long eyelashes. They always knew when my sugar would drop because so would my personality. I would suddenly go limp and nearly unresponsive.

Despite the continuous IV dextrose drip my body would still suddenly overproduce insulin and drop my sugar back into the 30s. When day 4 arrived the Pediatric Endocrinologist came into my hospital room early that morning. My parents prepared themselves for the worst when she came in and sat them down to discuss my plan of care. She said, “He is very young and when he had that seizure he more than likely used every ounce of glucose reserve his body had to offer so if he were to drop too low we would need to act quickly to help him recover because he probably can not do it on his own. However, in order to correctly diagnose him we must let his sugar crash one more time and when this happens you must step back and let the emergency team gather the appropriate labs and then recover him quickly.”

13 hours later I finally crashed and everything went as smooth as it possibly could have. Lab results revealed Hyperinsulism so I started on icky tasting diazoxide that same night and within hours we saw my glucose levels trend up and stabilize. The medication can cause fluid retention so at times I have to take a diuretic and it also causes excessive hair growth but my mom says it gives me character.

Because we have had a few bumps along the road I was sent to CHOP in July 2009 for evaluation. I was diagnosed with diffuse Congenital Hyperinsulinism and the diazoxide was adjusted. It was tough accepting the reality that there is no cure but my family and I are grateful I am doing so well. I will have to follow up with my local doctors every 2 months and return to CHOP annually. My endocrinologist Dr. Lynch, tell my parents to keep an open mind and always expect the unexpected with Hyperinsulinism.

Nonetheless, I am forever grateful to the beautiful nurses and doctors and Christus Santa Rosa Children’s Hospital in San Antonio , TX for taking such good care of me and my parents, they literally saved my life! Also I must thank the staff at CHOP for allowing us to feel so at home while there.