Type 1 diabetes is being diagnosed in more Americans from a wider range of ages than ever before. Type 1 is an autoimmune disease caused by an inherited genetic factor with an unknown trigger for onset. With Type 1 diabetes, formerly called juvenile diabetes and often referred to with borderline accuracy as insulin-dependent diabetes, the body misreads signals and produces antibodies that destroy the beta cells in the pancreas as if they were viral invaders. Pancreatic beta cells produce insulin, so when those cells are destroyed the body produces no more insulin itself and has to rely on injected insulin for survival. Type 1 diabetes can’t go undiagnosed for long. After full onset, a diabetic will normally develop life-threatening diabetic ketoacidosis within days if no insulin is given.
The symptoms of diabetes are well known and documented. Despite this, it’s not uncommon for parents or even pediatricians to miss the signs in toddlers and infants. In addition to the human factor, where doctors and families don’t see the warning signs because they simply want to deny it’s possible for a baby to develop a chronic dangerous medical condition, many of the symptoms look different in little ones than they do in older children or adults.
Excessive drinking and urination are the classic symptoms of diabetes. A diabetic without insulin has only one way to rid her blood of dangerously high glucose levels — she drinks and urinates it out.
However, kids often go through times when they drink excessively and they are perfectly healthy — when the weather changes, when activity levels change, when a toddler begins playing with and figuring out his sippy cup or becomes attached to it. For our family, we missed the excessive drinking because our child was still breast feeding. We were in the process of weaning her when she suddenly and drastically moved to demanding to nurse more and more often each day. We assumed it was a sleep or growth issue, many assumed it was a behavior or “training” issue. It wasn’t. Our daughter was desperately thirsty (and hungry) all the time. In fact, our decision to continue to allow her to nurse on demand probably saved her from a more dangerous onset event. But by the time she was diagnosed she was nursing hourly, throughout the day and night.
Hunger was also reflected for her in nursing. It’s the way she knew best to get the food she needed, and it combined food with liquid so it seemed the best choice to her. In the end, she was right. By getting her food in a low carbohydrate, high protein and nutrient form with hydration in the package, she bought us time to figure out her diabetes before she was in danger.
Many young children regularly drink milk and juice instead of water during the day. Parents are told these are healthy and nutritious choices. However, juice for us would have been cataclysmic. If my daughter had tried to get hydrated using apple juice instead of breast milk she might have wound up with a blood sugar of 500 to 1000 that first day at the hospital, instead of 300 to 400 (your blood sugar level hovers at about 100, give or take). If you suspect diabetes and your child is ravenously consuming juice, know that she may be seeking the water in the juice but instead worsening the problem dramatically with high levels of carbohydrate intake (all carbohydrates convert to sugars, so Type 1 diabetes watch carbs, not sugar).
Drinking excessively leads to urinating excessively. For us that meant full diapers, which we had seen in our other children during dry or hot days. Leaking diapers had always before for us meant our kids were getting ready to potty train, holding their urine and letting it go at once and leaking. But for our kid with diabetes, heavy diapers meant she was excreting glucose and ketones in her urine.
The difficulty with this symptoms was that we had a gradual change. The diapers got heavier and heavier over the course of about five months, until she reached a critical stage where the beta cells were almost completely destroyed. Parents of little kids have a hard time identifying, in all the incremental changes that rapid growth and development brings, when one of the changes is abnormal or a warning sign.
Our 20 pound child lost 4 pounds in the months leading up to diagnosis. Having no insulin means that the fuel of food, carbohydrates, is not taken in by the cells of the body properly. A child can eat and eat and still feel he is starving to death. Again, though, we never recognized the weight loss because children change their body shapes and even weights so much during those early years and months. Even our pediatrician didn’t recognize the trend at first. If you do notice weight loss, instead of just slowed or halted weight gain, in a young child, consult with your physician.
Kids who have diabetes cannot use glucose to fuel cells that need insulin. So the body reacts the way it would if you weren’t eating at all — it burns fat for fuel. In the process, ketone bodies are produce. Ketones stay small and harmless in most people, but in diabetics they can reach levels that are high and damaging, and ketone production can encourage more ketone production in a cascade that leads to DKA, where the child’s blood is acidified, breathing looks labored, and consciousness is eventually lost. Untreated, or unsuccessfully treated, DKA leads to death.
Your body expels ketones through breath and urine, and the ketones have an odor that is often described as “fruity”. It’s chemically similar to the smell of acetone nail polish remover. A diabetic child’s diaper will sometimes smell like this. We recognized the smell after diagnosis.
But before diagnosis, our pediatrician actually asked if her diapers had an unusual odor. We said no, because we were only trained to think of infections and other conditions that caused “bad” odors. Ketones smell a little like perfume and can easily be mistaken for the fragrances added to baby products like lotions, powders, or bath oils.
Our child never reached the stage where she expelled ketones through her breath. But kids can go into DKA and begin exhaling a fruity, sweet, acetone-smelling breath. This might seem to be an unmistakeable sign, but again, if the smell is missed all a parent or even a physician might see is the heavy breathing, and diabetes might actually be misdiagnosed as a respiratory illness and treated as unimportant until consciousness is lost. If the child loses consciousness at night, even that might be mistaken for simple viral tiredness. If you suspect diabetes and your child develops a breathing pattern of strong exhalation, contact your doctor immediately.