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Type 1 diabetes is a serious illness, and it is becoming more common among children in the United States. This is especially among non-Hispanic Blacks, Hispanics, and Asians/Pacific Islanders. What if we could tell a child had type 1 diabetes before they actually got sick? For some kids, it might be possible! Today, I’ll review which children could benefit, why it might be helpful, and the information families could gather in order to keep their children as healthy as possible.

I recently attended a pediatric medicine conference and appreciated a lecture by pediatric endocrinologist Henry Anhalt, DO. He discussed screening children for type 1 diabetes before they have symptoms. The information in this statement (from the American Diabetes Association, the Endocrine Society, and the Juvenile Diabetes Research Fund) supports the idea. The statement is a great and detailed resource.

How do we typically diagnose type 1 diabetes?

Most pediatricians have stories about diagnosing a previously healthy child with diabetes. Many times, the child is quite sick. Unfortunately, many times the child is hospitalized. They may need intensive care.

Type 1 diabetes is caused by injury to the part of the pancreas that controls insulin. (Insulin helps control blood sugar levels). Oftentimes, the person’s own immune system causes the “injury.”

After diagnosis, people with type 1 diabetes need to take insulin daily in order to keep their blood sugars at healthy levels.

Many times, a child will have dangerously high blood sugar levels when they’re diagnosed. While part of the diagnosis may include these high sugar levels, a person with type 1 diabetes also has certain autoantibodies. These specific autoantibodies are the part of the immune system that attacks the pancreas.

In the statement mentioned above, they define the first stage of type 1 diabetes as presence of 2 or more of those autoantibodies. This is even when the blood sugar levels are normal. So, somebody may have no symptoms at all and still technically have type 1 diabetes. If someone has the autoantibodies, there’s nearly a 100% lifetime chance they’ll go on to develop high sugar levels and the other symptoms of diabetes.

Who is at risk for type 1 diabetes?

Most people with type 1 diabetes have no family members with the disease. However, those that do have a relative with type 1 diabetes are at a much higher risk of developing it themselves. While the genetic risk is pretty clear (specific genes have been identified), there are also environmental risks. Things like diet, infections, or maternal exposures during pregnancy may also influence risk. So, for our purposes, the focus is the more easily-defined genetic risk. This means people with a sibling, parent, or other close relative with type 1 diabetes.

Why is it helpful to know if a child is going to develop type 1 diabetes in the future?

As mentioned earlier, if a young child has two or more of the autoantibiodies, they have about a 100% chance of developing type 1 diabetes symptoms in their lifetime. However, it may be months or years in the future.

Why would a family want to know so far ahead of time? As I mentioned, some kids are very sick when they’re first diagnosed. If the sugar levels are too high, it can lead to diabetic ketoacidosis (DKA). DKA is life-threatening. That being said, it can be treated in the hospital. Children can recover. However, research shows children who have had DKA are at risk for problems with cognition and even lower IQ.

If a family already knows that their child will eventually develop diabetes, they can keep it in mind with minor illnesses. Sometimes, what appears like the flu or a stomach bug can actually be the first signs of diabetes. Initially, the symptoms can be pretty vague. Sometimes, it’s only after a child gets much sicker that they get diagnosed with diabetes. (Most pediatricians do not routinely check blood sugar levels during common illnesses in healthy children).

Which children could be screened for type 1 diabetes?

This idea of screening comes from type 1 diabetes research in “high risk” people. High risk includes siblings or children of people with type 1 diabetes. It could also include second-degree relatives. So, if one is thinking about screening, they may consider this high risk population.

In his presentation, Dr. Anhalt discussed screening high risk children at around age 2. If they are negative, they can repeat the screening at age 5. This is because many of the autoantibodies develop between 9-24 months of age. An autoantibody develops after the body has had some kind of immune response. This can be as simple as a body’s response to a common cold.

So, here’s one approach. If a child has a close relative with type 1 diabetes, their parents could discuss screening with their physician. The screening may be a blood test at age 2 for those specific autoantibodies.

A few important thoughts about screening for type 1 diabetes in children:

If the test is negative (no autoantibodies) this does not rule out the child developing diabetes in the future. Many people don’t develop these autoantibodies until they’re much older.

I do not know if insurance routinely covers such a blood test for children with no symptoms. In fact, according to the Sonora Quest website (a popular commercial laboratory), they do not recommend the autoantibody testing in healthy people unless it’s for research purposes.

This is a perfect example of a post for informational purposes only. This is not by any means medical advice for high risk kids. My goal is always to empower with information. Every family for whom this is relevant can consider discussing their situation and questions with their child’s pediatrician.

We must also remember that most people diagnosed with type 1 diabetes don’t have a strong family history of the disease. Based on the available research, this information does not apply to them.

Summary: Screening High Risk Children for Type 1 Diabetes

If a child has a first or second degree relative with type 1 diabetes mellitus, they are more likely to develop the disease themselves. For these children, one might consider a blood test at around ages 2 and 5 years old. The test is for specific autoantibodies. If two or more of the autoantibodies are present, the screening is positive. In this case, the child would be diagnosed with the first stage of type 1 diabetes. This is useful for preventing the often-catastrophic complications of a delayed diagnosis.