What is it like for siblings if their brother or sister has Hyperinsulinism?

Siblings can feel proud and protective of their brothers and sisters who have Hyperinsulinism.  They may also worry about  what happens when their sibling’s blood sugar levels drop quickly (hypoglycaemia). They know this can be dangerous and their sibling may need urgent help, which can be frightening.  Hyperinsulinism can mean that their brother or sister has time away from school for appointments or has to spend time in hospital for tests and procedures. Family plans or activities might have to be changed or cancelled at the last minute which can leave siblings feeling disappointed, angry, upset, or left out.

What causes Hyperinsulinism?

There is an organ in the tummy called a Pancreas. Its job is to help digest food and control blood sugar by producing a hormone (or chemical messenger) called Insulin.  Insulin tells your body to use and remove sugar from the blood stream.  However, in Hyperinsulinism the pancreas makes too much insulin, removing too much sugar from the blood causing low blood sugar (hypoglycaemia).  This is dangerous as the body needs a constant supply of sugar to help it work properly. When the blood sugar is too low it can cause damage to the brain and other important organs.

What does it mean?

Children with Hyperinsulinism may have the following signs and symptoms of hypoglycaemia: headaches, dizziness, weakness / tiredness, confusion, changes in behaviour, paleness, shakiness, sweating, staring, blurred vision and seizures.   Some children with Hyperinsulinism do not show any symptoms even when their sugars are dangerously low.

What treatment is there?

Children with Hyperinsulinism need to check  their blood sugars by using a handheld blood sugar monitor. They will put a very tiny drop of blood on a test strip and the machine will tell them what their blood sugar level is.  If it is too low, they will eat some food or take some medicine to raise it up to a safe level.  They may also have a continuous glucose monitor (CGM) system inserted, which can alert them if their sugar is too low.

Some children with Hyperinsulinism may need to take their medicine and feeds regularly on time to help them control their blood sugars. Occasionally, children may need an operation to remove part of their pancreas.

This has been read and approved for publication by The Children’s Hyperinsulinism Charity in December 2022 and will be reviewed and updated every 2 years