“His doctor is Dr. Paul Thornton from Cook Children's Hospital and he has been wonderful to work with in ensuring River is living as normal of a life as possible.” – River’s Mom
River was born April 20, 2010, 3.5 weeks early in Kyle, TX. At birth his blood sugar was 9! The nurse had never seen a blood sugar reading that low and rushed for formula to try to get his blood sugar up. The second reading was 25, still extremely low.
They told us that this sometimes happens with pre-term babies and they hoped he would go home within days once stabilized. That day never came and they knew something more was going on. He transferred to a higher level NICU in Austin. They told us he would need a central line to run through a major artery to give him the amount of dextrose his body required. Time past and they could never get it under control.
After 3 months, we received the genetic testing to confirm that he had a genetic disorder called Congenital Hyperinsulinism. We immediately turned to the internet and found online parent support groups that helped us find some clarity and comfort in knowing someday he could live a life outside of the hospital. We were grateful to hear the stories of other children and helpful information on treatment.
River was going to need to go home on a feeding tube connected to his stomach that kept him fed continuously. That was the only way to keep his blood sugar stable because the current medications available didn't help him much.
River was fed continuously for a year and eventually we were able to go longer stretches between feedings. Through feeding therapy at almost 2 years old, he eventually learned how to eat and we are now able to have him snack regularly. He can still only fast for 2-3 hours before his blood sugar gets dangerously low. He is now almost 8 years old and still has his g-tube for overnight feedings. He has to visit the nurse at school to get scheduled blood sugar checks and also gets extra snack times.
His doctor is Dr. Paul Thornton from Cook Children's Medical Center and he has been wonderful to work with in ensuring River is living as normal of a life as possible. He is a severe case and none of the current medications used to treat Hyperinsulinism will help him. Our hope is that someday they find a cure or a medication that will help him be able to fast for longer than 3 hours.
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