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Type 1 Parenting

What is Type 1 Diabetes?

Type 1 Diabetes mellitus (T1D) is a lifelong condition where the body stops making insulin, a hormone needed to move sugar from the blood into the body’s cells for energy. Because of this, people with type 1 diabetes need insulin every day to stay healthy.
There are other types of diabetes (Type 2, Gestational, and more) which have other causes but the end effect of high blood sugar is common to them all.
“Diabetes” is from the Greek for “to pass through” (i.e. urinate)
“Mellitus” is from the Latin for “sweet”
It literally means to have sweet urine, which is a sign of high blood sugar (yes, before modern medicine doctors would taste the urine to confirm a diagnosis!)

Why did my child get Type 1 Diabetes?

Children get Type 1 diabetes because their immune system mistakenly attacks and destroys the cells in the pancreas that make insulin.

Doctors don’t know exactly why this happens, but they know a few key things:

  • It is an autoimmune condition
    The child’s immune system attacks healthy insulin‑producing cells by mistake.
  • It is not caused by sugar, diet, or parenting
    Eating sweets, lifestyle choices, or anything parents did or didn’t do does not cause Type 1 diabetes.
  • Some children are genetically more likely
    Certain genes can increase risk, but many children with Type 1 diabetes have no family history.
  • Something in the environment may trigger it
    A virus or other unknown trigger may start the immune attack, but this isn’t predictable or preventable.
  • It can happen at any age
    Type 1 diabetes is known as “childhood diabetes” and often appears in childhood but can develop at any age.

What does daily life look like with T1D?

T1D doesn’t need to stop you or your child from doing anything. What you will need to do is plan a bit more, there are 3 key things to manage daily:
Check blood sugar levels.
Take insulin.
Balance food, activity and insulin.

What is happening to my child’s body without insulin?

Insulin allows the body to use carbohydrates (sugars) for energy. Without insulin two key things happen:
Blood sugar increases. Too high blood sugar in the short term (hours to days) can cause thirst and frequent urination, as the body tries to flush out the excess sugar. Other symptoms can be weight loss, tiredness, headache and dizziness. Long term (weeks to years) high blood sugar causes damage to organs and blood vessels.
Ketones increase. If the body can’t process sugar for energy, it will use fat instead. Over time this can lead to a build up of Ketones in the blood. Ketones are acids which at high levels cause diabetic ketoacidosis (DKA), meaning the blood gets too acidic, causing problems for the body’s organs. DKA is a medical emergency requiring immediate treatment.

What should blood sugar levels look like?

The goal of T1D management is to keep blood sugar within a certain range, your medical team will define what that range is for your child.
Normal blood sugar for the general population is around 3.9 – 7.8 mmol/l or 70 – 140 mg/dl, depending on when the last meal was eaten.
Anything consistently over 7 mmol/l or 126 mg/dl is generally considered diabetes.

Hyperglycemia (too high blood sugar): above 10mmol/l (180mg/dl).
Your child will likely frequently experience hyperglycemia, and it’s important to remember that short-term (measured in hours) highs are normal and expected with T1D, though they do need management*.
Prolonged highs, or highs over 13.9mmol/l (250mg/dl) should be treated more seriously and ketone levels checked freqently.
Remember that illness will often cause higher blood sugar levels, so should not be a surprise but still needs managing.

*Be wary of “stacking” insulin. See Glossary.

Hypoglycemia (too low blood sugar): below 3.9mmol/l (70mg/dl).
If unconscious or unable to swallow this is a medical emergency, seek professional help immediately.

Your child will also likely experience hypoglycemia sometimes, typically because the amount of insulin taken is too much for the amount of carbohydrates eaten and digested, or too much exercise without sufficient blood sugar.
This is more immediately serious than high blood sugar and needs to be managed straight away (levels below 3.0mmol/l or 54mg/dl are considered urgent).
A commonly used guide is the 15-15 rule*: Eat 15 grams of fast-acting carbs and then recheck blood sugar after 15 minutes. Repeat as necessary to bring blood sugar within target range.
Fast-acting carbs are glucose tablets, sugar, honey, sugary sodas, fruit juice etc. It’s a good idea to have a handy supply in the house and when travelling or doing sports. Avoid chocolate or other high fat foods as these will slow digestion of sugars.

*Small children may require less than 15 grams, discuss with your medical team.

Can’t we just stop eating sugar / go on a keto diet?

No, unless specifically recommended by your medical team the risk of diabetic ketoacidosis is too high.

Will my other children get T1D?

Maybe…as the exact causes of T1D are not fully understood, it’s impossible to predict whether other relatives will also be diagnosed eventually. T1D can happen at any age.
Here are some approximate statistics of being diagnosed (estimates vary depending on the source):

Overall likelihood: 0.3% or 3 in 1000 people
(90% of people have no prior family history)

While sometimes known as “childhood diabetes”, only ~40% of diagnoses happen up to the age of 20.

Sibling has T1D: 5-10% chance other siblings will be diagnosed (50% for identical twins)

Parent has T1D: 3-6% chance of child being diagnosed (if both parents, up to 25%)

If you are concerned about the risk of a sibling also being diagnosed, consider purchasing a blood glucose monitor for them in order to check blood sugar. Remember, T1D is not preventable and no-one is to blame.

How am I going to cope with this?

Firstly, remember you aren’t alone. Your medical team, friends and family, and this site and plenty of others (see References) are here to help. The first months are a steep learning curve but this site intends to help you climb that curve faster.
Secondly, remember T1D needs planning and managing, but it doesn’t mean it has to stop your child from doing anything, people with T1D can still live full and enjoyable lives.