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Signs of type 1 diabetes in children include intense thirst and need to urinate, along with fatigue or lethargy.

Type 1 diabetes can develop at any age, but the majority of newly diagnosed cases still develop during childhood, even in children less than one year old. The younger the child, the more difficult it is to understand their symptoms, simply because they cannot verbalize them to you.

Here is everything you need to know about detecting type 1 diabetes in children.

 

What is type 1 diabetes?

Formerly known as “juvenile diabetes” when it was believed that it only developed during childhood, type 1 diabetes is an autoimmune disease. This means your body’s own immune system begins to attack itself. More specifically, your immune system attacks and destroys the beta cells produced by your pancreas.

The beta cells are responsible for producing insulin. Long after diabetes is diagnosed, the pancreas continues to produce beta cells but the immune system continues to attack and destroy most or all of them on a daily basis.

Without insulin, your body cannot make use of glucose (sugar) in your bloodstream. As your blood sugar level rises with less and less insulin available, a number of serious and life threatening issues develop:

  • Toxic levels of ketones are formed when your body is forced to burn body fat for fuel because it cannot make use of sugar in your bloodstream without adequate insulin.
  • Nerve endings in your fingers, toes, eyes, and other vital organs are gradually damaged or destroyed by the excessive amount of sugar present in your bloodstream.
  • Your body begins to crave more sugar because, despite the excessive amount of sugar in your bloodstream, your body cannot absorb it without adequate insulin.
  • Left untreated for too long (a few weeks to a couple of months), severe high blood sugar levels and toxic ketone levels can lead to a seizure, stroke, organ failure, and death.

Blood sugar levels in a person with type 1 will generally rise very quickly — over the course of days and weeks. Your child can go from seeming completely healthy to feeling very sick within two to three weeks after the full onset of type 1 diabetes has begun.

 

The difference between type 1 and type 2 diabetes

To clarify, the key difference between the two main types of diabetes is that type 1 diabetes is an autoimmune disease, whereas type 2 diabetes is a metabolic disorder.

In type 2 diabetes, blood sugar levels usually begin to rise very gradually — and without ketones — over the course of years before signs and symptoms become noticeable.

For some people, type 2 diabetes is the result of insulin resistance and can be “reversed” or managed through losing weight, improving diet, and getting regular physical activity.

However, approximately 60 percent of people develop type 2 diabetes because their bodies are struggling to produce healthy beta cells. These people will inevitably need diabetes medications, including insulin, to maintain healthy blood sugar levels.

In the past, type 2 was virtually unheard of among youth. Nowadays that is changing, partly due to poor diets and increasing obesity in Western countries. But type 1 diabetes, the autoimmune kind, remains the most common and highest-risk type to look out for in children.

 

Spotting the signs and symptoms of type 1 diabetes in your child

Type 1 diabetes can appear, at first, like a curious type of flu. Your child’s healthcare team may suggest it’s simply a virus and send them home to rest, but ignoring the symptoms and delaying diagnosis and proper treatment can be life threatening.

The first sign of type 1 diabetes in children of any age is usually a sharp increase in their thirst and need to urinate, and this generally starts when blood sugar levels are persistently above 200 mg/dL, explains Allison Pollock, pediatric endocrinologist at the University of Wisconsin School of Medicine and Public Health.

“This intense thirst and need to urinate happens when sugar builds up in the blood, over 200 mg/dL, and is then filtered out of the blood into the urine by the kidneys,” explains Pollock. “Without enough insulin in the body, the sugar in the blood goes into the urine, which is why your body has less and less energy as blood sugars continue to rise.”

Your child will feel unquenchably thirsty as the body continues to draw fluid from everywhere in the body in order to pass the excessive amounts of glucose being filtered by the kidneys. This can also mean that potty-trained toddlers and children may start wetting their pants or their bed as they struggle to keep up with the intense need to urinate more often, explains the JDRF.

Your child may present with several or all of these top four symptoms of undiagnosed T1D, according to the JDRF:

  • intense thirst and an increased need to urinate
  • fatigue or lethargy
  • changes in vision, such as blurred vision
  • unexplained weight loss
  • intense hunger
  • increased frequency of urine/wet diapers, or wetting their pants or bed despite being potty-trained
  • changes in vision (e.g., standing closer to the television)
  • persistent diaper rash or yeast infection
  • fruity, sour-smelling breath
  • persistently irritable, moody, or restless
  • dry bowel movements or constipation

Look for these additional symptoms of T1D in toddlers or babies:

  • intense hunger
  • increased frequency of urine/wet diapers, or wetting their pants or bed despite being potty-trained
  • changes in vision (e.g., standing closer to the television)
  • persistent diaper rash or yeast infection
  • fruity, sour-smelling breath
  • persistently irritable, moody, or restless
  • dry bowel movements or constipation

And in older children and adults, symptoms of T1D can also include itchy or dry skin and recurring yeast infections.

 

When to call a doctor or visit an emergency room

If your child’s type 1 diabetes hasn’t been diagnosed yet, and they’ve been enduring sharply rising blood sugar levels for several weeks, they may begin to show extreme symptoms that can be life threatening.

If any of the following symptoms develop, bring your child to an emergency room immediately:

  • vomiting
  • inability to consume liquids without vomiting
  • difficulty breathing
  • labored breathing
  • inability to stay awake
  • loss of consciousness
  • seizure
  • stroke

This may seem obvious, but hesitating to get emergency treatment with these symptoms can have disastrous results — every minute counts!

 

What are normal blood sugar levels in a child?

By the time you suspect type 1 diabetes in your child, their blood sugar levels are likely well above normal — around 200 mg/dL or higher.

According to the American Diabetes Association, normal blood sugar levels for a person of any age include:

  • Fasting blood sugar (in the morning, before eating): under 100 mg/dL
  • 1 hour after a meal: 90 to 130 mg/dL
  • 2 hours after a meal: 90 to 110 mg/dL
  • 5 or more hours after eating: 70 to 90 mg/dL

Testing for type 1 diabetes

Even if not in an emergency situation, if you suspect your child may have T1D, insist that their healthcare team draw a blood sample to measure blood sugar levels and collect a urine sample to measure both glucose and ketone levels.

You may have to be very persistent, because it is not at all uncommon for doctors to miss the telltale signs of T1D.

 

The tragedy of a missed type 1 diabetes diagnosis

Sadly, every year there seem to be one or two deaths in the news of a child who presented with signs and symptoms of type 1 diabetes but was sent home to rest with a supposed bout of the flu.

Testing for type 1 diabetes is easy, but if it isn’t tested for, it can result in a preventable tragedy!

Read more about campaigns to promote screening all babies, toddlers, and children for type 1 diabetes, many of them borne out of calamity:

You must insist that your child’s blood sugar and ketone levels are tested. Do not take “no” for an answer!

 

What causes type 1 diabetes?

So where does T1D come from? Why might it happen to your child?

Scientists have confirmed that there is a genetic component to T1D, but it’s not entirely clear how the disease is passed down, and there are many other factors at play.

“Type 1 diabetes does run in families and many newly diagnosed individuals already have a family member living with type 1 diabetes,” says Wisconsin endocrinologist Pollock. “If one parent has type 1 diabetes, a child has a 5 percent chance of developing type 1 diabetes, compared to a 40 percent chance in the case of type 2 diabetes.”

There are several genetic changes that can be tested for that are known to be more common in individuals with type 1 diabetes, adds Pollock, but many of these mutations or variations can be found in individuals without the disease, too.

“The leading theories suggest individuals with some known genetic variations are at risk for type 1 diabetes and these individuals then have some non-genetic, potentially environmental change that occurs and triggers the onset in someone already at-risk.”

Potential environmental triggers that initiate the onset of T1D could include:

  • the flu or other serious illness
  • trauma, in the form of death of a loved one or divorce (for adults)
  • dietary inflammation (gluten and cow’s milk have both been subjects in research)

While other family members may not have type 1 diabetes, they may have autoimmune diseases like hypothyroidism or Celiac disease, which indicates a genetic predisposition to developing an autoimmune disease.

TrialNet Research: If a parent or sibling has type 1 diabetes

The leading organization exploring the genetic components and other causes of diabetes in children is TrialNet, an international network of the world's leading T1D researchers. At clinic sites around the world, they are testing the autoantibodies in children up to age 18 who are a direct relative of someone with type 1 diabetes — a parent, sibling, aunt, uncle, cousin, or grandparent.

Autoantibodies are produced in the body when your immune system is attacking itself, which is what happens in the development of type 1 diabetes.

TrialNet’s research has pinpointed at least two important details about identifying T1D in children:

  • Even if a child’s insulin production isn’t noticeably impaired — resulting in diagnosable blood sugar levels — until they are 10 years old, they will likely test positive for two or more autoantibodies before the age of 5. This can help put the child “on watch” for a T1D diagnosis.
  • A child who tests positive for only one or zero autoantibodies by 5 years old is significantly less likely to develop type 1 diabetes.

If a child does test positive for two or more autoantibodies, TrialNet researchers can enroll them in one of several ongoing studies that aim to prevent the full onset of the disease with immunotherapy drugs that suppress the immune system’s attack on the pancreas.

Visit TrialNet today to see if your child qualifies for autoantibody testing.

 

After a type 1 diabetes diagnosis… what happens next?

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OK, so your child has been diagnosed with type 1 diabetes. What happens now?

“Every clinic and diabetes team has a different style but most of the time the first few visits after diagnosis will have the main focus be around support and education as families are adjusting to life with a child with type 1 diabetes,” explains Pollock.

Still, you and your child should expect to be gradually taken through the following standard steps over the course of the first week:

Short-term hospitalization

If your child’s blood sugar levels are well above 500 mg/dL along with high levels of ketones at the time of diagnosis, they will most likely be admitted to the hospital for a few days to receive intravenous insulin, saline, and lactated ringers (sodium chloride, sodium lactate, potassium chloride, and calcium chloride) to rebalance the body’s blood glucose, fluid, and electrolyte levels.

In case you are lucky to catch your child’s T1D early — when blood sugar and ketone levels aren’t as dangerously elevated — they will likely be started on insulin therapy within a day or two of diagnosis at a scheduled appointment with a pediatric endocrinologist, without needing to stay overnight in the hospital.

Starting insulin therapy

As a person with type 1 diabetes, your child will need to begin insulin therapy immediately to bring their blood sugar levels down into a safe, healthy range.

People with T1D need insulin 24/7 for the rest of their lives in order to survive. As scary as this sounds, it is quite manageable with today’s advanced tools and care.

The two main methods to get insulin into the body are:

  • Multiple daily injections with an insulin pen(s) or syringes and vials: This method requires a long-acting (background) insulin and fast- or rapid-acting insulin for meals and blood sugar corrections.
  • Insulin pump or pod: A small device attached to the body gives a continuous feed of background insulin, and with the push of a button, you or your child can administer additional insulin to cover food or bring down high blood sugar with an insulin “correction.”

It was only 20 years ago that T1D children were given the opportunity to use insulin pumps rather than multiple daily injections. A pump has the advantage of providing a lot of flexibility in adjusting and programming doses, and many people swear by them.

Learn more from DiabetesMine’s expert Wil Dubois on whether to use an insulin pump or multiple daily injections — both choices come with a variety of pros and cons.

Note that since 2015, a form of inhaled insulin has also become available, although to date it is not yet FDA approved for use in children — presumably because of concerns about potential effects on growing lungs.

Daily monitoring of blood glucose levels

In tandem with taking insulin, your child will need to learn to monitor their blood sugar levels throughout the day, for the rest of their lives. This is because blood sugar levels can change quickly based on everyday life variables like food, activity, insulin, hormones, stress, and changes in weight.

Again this sounds scary, but fingerstick test meters and newer continuous glucose monitors have become quite sophisticated and relatively easy to use.

Counting carbohydrates (and other nutrition education)

Dosing insulin every meal depends largely on what you eat. Fortunately, today’s insulin provides people with T1D the ability to mostly eat what and when they want — but this freedom comes with the responsibility of dosing insulin carefully.

You will need your doctor to help identify your child’s proper insulin-to-carbohydrate ratio (I:C), which is the amount of carbohydrates that 1 unit of insulin can cover, to take the right dose amount for maintaining healthy blood sugar levels after eating. .

Rest assured that all of this will become easier as you go about life with T1D. You and your child will learn how their blood sugars react to certain common foods. Protein and fat content do impact blood sugar too, but setting insulin doses starts first with estimating carbohydrate content in any food.

Routine appointments and ongoing diabetes education

The American Diabetes Association recommends four clinic visits annually with a diabetes team as well as some standard tests for associated conditions and complications on an annual basis.

“Your healthcare team should also support you by providing a social worker or case manager to help maintain adequate health insurance and financial resources that make keeping up with healthy diabetes care financially possible,” Pollock adds.

 

Managing your family’s diabetes attitude and mental health

Living with type 1 diabetes is a 24/7 job that neither you nor your child will ever do perfectly. It’s important to keep that in mind!

Many people living with it describe type 1 diabetes as a juggling act, and the balls you’re juggling constantly change. Maintaining a “science project” attitude can help tremendously in preventing guilt and burnout. Every high blood sugar is simply a learning opportunity, and every low blood sugar needs to be treated… and then life goes on!

Know that children with type 1 diabetes can live long, healthy, full lives!

Some excellent resources and networking opportunities for families of T1D kids can be found here:

 

This article has been medically reviewed by Maria Basina, MD, on 11/6/2019.