Family guide

Bring with you:

• Your child’s health booklet or vaccination card
• Every dated height and weight you have, from the health center, clinics or school
• Earlier test results and X-rays, especially bone age films and their reports
• A list of your child’s medicines, supplements and herbal products, with amounts
• The newborn screening result, if the question is about the thyroid
• For a child with diabetes: the insulin plan and glucose records or sensor data

It helps to know: both parents’ heights, the age puberty began for each, and any hormone conditions in the family. Your child’s birth weight and length, and whether the birth was early or late.

Write down your questions. Put your worries on paper before the visit.

Talk to your child. Explain simply that height will be measured and there will be an examination. Include older children in the talk. An examination for puberty respects the child’s privacy and is done with a parent present.

How do we measure?

1. Take off shoes and socks, and remove hair clips or hats.
2. Your child stands with their back to a flat wall, heels close together and touching the wall.
3. They look straight ahead without lifting the chin.
4. Lay a book or ruler flat on the head and mark the wall under it.
5. Read the distance from the mark to the floor with a metal tape and write it down to the nearest half centimetre.

How often? For most children every three to six months is enough. Measuring every week shows nothing and only adds worry.

For better accuracy: measure at about the same time of day with the same tape. Write the date beside the number. Children under two are better measured lying down at a health center or clinic.

What should we tell the doctor? If growth has slowed, or height has hardly changed over several measurements in a row, do not hold this for the next routine visit. Arrange to be seen sooner.

Blood tests. Ask whether fasting is needed and what time the sample should be taken, because some hormones depend on the time of day. Do not stop your child’s medicines before a test without the doctor’s say-so. If your child takes thyroid medicine, ask whether to give the tablet before or after the sample that day.

If your child is afraid of needles. Be honest that it hurts a little and is short. Do not make false promises. Offer a small choice, such as which arm. A book or phone helps distract. Ask whether numbing cream is possible.

Blood sampling at home. The support network offers blood sampling at home, which is easier for some children.

Bone age X-ray. This is a simple picture of the left wrist and hand, usually with no special preparation and a low radiation dose. It takes a few minutes. Bring the film itself later, not just the report. What does bone age show?

Stimulation tests. For some hormone deficiencies, several blood samples are taken over a few hours. Ask in advance about fasting, timing and who should come, and have this test only at a center with the right facilities.

Before going back to school, talk to the head and the teacher and make these clear:

• What low blood sugar looks like in your child and what to do
• Where fast-acting sugar and snacks are kept
• Where glucose checks and injections happen and who helps
• Your number and one more person who can always be reached
• A care plan signed by the doctor

Your child must be allowed to drink water, go to the toilet, check glucose and eat whenever needed, even during a lesson or exam.

The school bag: the meter or sensor reader, insulin and injection supplies as planned, fast-acting sugar and a snack.

Sport and trips: exercise is good for your child and must not be dropped because of diabetes. Plan with the doctor before PE lessons and trips.

If low blood sugar is severe: a child who is unconscious or having a seizure gets nothing by mouth. Staff should call 115 and the family. If glucagon has been prescribed, a trained person gives it as planned.

Think about how your child feels. Some children are embarrassed to inject in front of others. Decide together how much the class should know.

The most important rule: do not stop insulin, even if your child is not eating. The body needs insulin during illness too. The amount may change, but that is decided by the sick day plan or the care team.

On a sick day:

• Check blood glucose more often than usual
• Check blood or urine ketones as planned
• Give fluids slowly and regularly
• If your child is not eating, give sugar-containing fluids or food as planned
• Write down glucose, ketones, insulin and times

Get this plan from the care team in advance: insulin amounts on sick days, ketone limits, and the number to call. Always keep ketone strips at home and check their date.

Go to the emergency department or call 115 straight away if:

• Vomiting keeps happening or your child cannot keep fluids down
• Ketones are high or rising
• Breathing is fast and deep, or tummy pain is severe
• Your child is drowsy or confused
• Glucose is low and does not rise with sugar by mouth
• Your child is very young and you are worried

Any child:

• Thirst, a lot of urine and weight loss together with vomiting, tummy pain, fast deep breathing, fruity breath or drowsiness. This can be diabetic ketoacidosis.
• Extreme weakness, confusion, a seizure or unconsciousness

Thirst, a lot of urine and weight loss alone also cannot wait until next week: have the blood sugar checked the same day.

A child with diabetes:

• Repeated vomiting or high ketones
• Low blood sugar with unconsciousness or a seizure. Put nothing in the mouth.
• Low blood sugar that does not rise with sugar by mouth

A child with adrenal insufficiency or on steroids:

• Vomiting, severe illness or injury. Follow the doctor’s plan, go to the emergency department without delay, and say your child depends on steroids.

A newborn:

• A call to repeat thyroid screening: act the same day.
• A baby who is feeding poorly, vomiting and limp: go to the emergency department at once.

Call sooner than your routine visit for:

• New, repeated headaches or changes in vision together with a growth or puberty problem
• Fever or sore throat in a child on medicine for an overactive thyroid
• A child whose growth has suddenly stalled

This list does not cover everything. If your child’s condition worries you, do not wait.