Your first visit to our center will be either an outpatient or inpatient visit, depending on the severity of your child’s disease and what best suits your child’s needs.
Our outpatient visits happen on the 3rd floor of the Wood Building on CHOP's Main Campus. During an outpatient visit, you and your child will meet with one of our HI Center pediatric endocrinologists or nurse practitioners, who specialize in the care of children with congenital HI. You may also meet with a dietitian or social worker.
During this visit, our clinical team will:
- review the history of your child’s HI
- review any pertinent family history
- talk with you about how the HI has been managed
- review any blood glucose records you have and possibly obtain new lab work
- develop a comprehensive plan for management and follow-up
Often times, the evaluation that your child with congenital HI needs can best be obtained during an inpatient admission. This will either happen as a scheduled admission, if your child is relatively stable and coming from home, or as an emergency transport, if your child is currently hospitalized elsewhere for their congenital HI.
Your child will be hospitalized on either our endocrine inpatient unit or in the Neonatal Intensive Care Unit (NI/ICU). Our nursing staff has vast experience caring for children with congenital HI.
There are a variety of tests and evaluations that may occur during an inpatient evaluation. An important test that we will likely perform is a fasting test.
With the fasting test, your child will not receive anything containing sugar and blood glucoses will be monitored closely until the blood sugar is <50 mg/dL. At this time, our nurses will obtain what we call a “critical sample,” which is a snapshot of how your child’s body is adapting to low blood sugar, if counter-regulatory hormones and responses have appropriately been turned on or off.
After these blood samples have been obtained, then your child will receive glucagon 1 mg to see if they have an inappropriate rise in blood sugar with this. All of these labs and tests will confirm the diagnosis of congenital HI.
- Rare Find: A rare disease, an uncommon expertise. Details about CHOP's Congenital Hyperinsulinism Center.
- Guide for Parents. Offers information about what to expect at CHOP's Congenital Hyperinsulism Center, as well as how your child will be evaluated and treated.
- Pre-admission HI Patient and Family Checklist. Helpful details about what questions CHOP staff will ask you when making an appointment for your child with the Congenital Hyperinsulinism Center.