Will She Grow Out of It?

That would be the number one question people who don't know about diabetes ask me.

The answer is.... NO. Other questions often revolve around what she can and cannot eat - I guess she can't have sugar? Is she allowed to eat cake? Admittedly, that was one of the first things I thought of while I waited in the doctor's office, holding her limp and sweaty body. She'll never be able to have birthday cake again. I knew nothing that day about diabetes, except that there were three types, and that I was going to have to give my daughter shots every day. I did know that there was no cure.

I got my crash course in 3 days at the Children's Hospital of Philadelphia. And after that, they sent us home with all our diabetes supplies, education books and a direct line to our discharge nurse. But essentially we were on our own to navigate our way through carb counting and food boluses, testing blood sugars and correcting high numbers with more insulin shots. It was scary, emotional, confusing, scary and exhausting. Did I mention scary? Whereas most human conditions are managed primarily by doctors who give instructions and prescriptions and tell you exactly how much to take and when - diabetes is, and has to be, primarily a self-managed disease. YOU - the patient and/or the parent - are responsible for your own or your child's care, dosing and testing. Because insulin needs are determined by so many factors and are constantly changing, day-to-day and sometimes hour-by-hour.

There are 3 types of diabetes: Type 1 (also known as Juvenile or insulin-dependent diabetes), Type 2 (also known as adult-onset diabetes) and Gestational. Ava has Type 1.

So... what IS diabetes? The main difference between Type 1 and Type 2 diabetes is that the pancreas in Type 1 stops making insulin. Insulin is responsible for maintaining our blood glucose at healthy levels. These little cells in the pancreas, called beta cells, make insulin. In Type 1's, the body doesn't recognize these cells as its own and begins to attack them... eventually destroying all of them. Without enough insulin to bring it down, the blood glucose levels begin to go up. The most common signs of Type 1 diabetes are constant thirst, frequent urination and, because insulin is not present to direct sugar into the body's cells for energy, the body breaks down fat for energy - which causes weight loss.

Ava's most obvious sign was the constant thirst - she was drinking water like it would all be gone tomorrow forever. Hmmm.... I thought, that's strange. What is it that causes this? I thought. But I quickly put it out of my mind. I couldn't bear to think of anything being wrong. Oh the guilt I have over letting this fly by! And the other sign was the frequent urination - she was saturating diapers every night for a week. These diapers were failing at their job miserably too - I'd wake to find her pajamas wet, and the bed too. She had some weight loss - but it wasn't as noticeable as the primary signs. Blood glucose (also referred to as blood sugar) levels of a non-diabetic should fall between 80 and 120. Ava’s on diagnosis: 416.

In Type 2 diabetes, insulin is still being produced but the body is unable to use it efficiently. The insulin just doesn't work as well. Type 2 is due partly to genetics, but is also an effect of diet and lifestyle. The symptoms are similar to Type 1 and can be: unusual thirst, frequent urination, low or no energy, and frequent infections, or even no symptoms at all - just a high blood glucose reading on a routine screening. Type 2 can be managed - and some believe even reversed - through diet, exercise and, in the case of overweight, weight loss. Often oral medications are prescribed to increase the body's sensitivity to its own insulin. In more advanced cases, Type 2’s will eventually take insulin too.

How did she get it? We have no idea. Causes of Type 1 can be linked to genetics, environmental factors and often (though not always) is kicked into action by a virus or illness. Ava was not sick before her diagnosis. Unless her pneumonia back in February started the autoimmune response that ended in June. As far as genetics go, I have one very distant cousin with T1 on my dad’s side. So does that mean I carry the gene? Maybe. The environmental factor is a curious one. Consider this: there are 3 children (including Ava, had she attended public school this year) – THREE – who ride the same school bus with Type 1 diabetes. All of these children born and raised in the same area, being diagnosed by age 5. Hmmm. Anyway, nothing we did or did not do – caused Ava’s diabetes.

So what do we do? Ava wears an insulin pump, which delivers a pre-programmed dose of basal insulin every 3 minutes. Basal refers to the insulin required to maintain blood glucose levels 24 hours a day, whether one is eating or not. This is how an insulin pump mimics the pancreas. Whenever Ava eats, her blood sugar is tested, we calculate the total carbs, and input those numbers into the pump – and the pump calculates a recommended food bolus (a one-time dose of insulin to cover a meal), which we manually enter and press “Go.” This insulin takes about fifteen minutes to “get started,” which is why we wait to eat. If her blood sugar is high, we wait longer.

What do we worry about? It may be easier to say what we don’t worry about. We worry about the fat she eats, which raise blood glucose hours after she eats it and long after insulin is done “working” (insulin boluses peak at 2 hours). We worry about cholesterol levels and hers, at age 5, are already elevated.

We worry about low blood sugars – which make her emotionally unstable, irrational and physically combative – and, if left untreated, will continue to drop dangerously low leading to unconsciousness and in the worst case scenario, death. It can and has happened. This is why I seem always preoccupied, distracted, seem like I’m not really listening and I’m always watching her, particularly when she’s running laps around the playground with her friends. Low blood sugars are caused by: too much insulin, not enough food, exercise, excitement and certain types of illness (as we learned last year during the 24 hour exorcist bug).

How do we treat them? Sugar. Juice, candy (not chocolate), cake frosting, glucose tablets, or complex carbohydrates like peanut butter crackers.

We worry about high blood sugars. High blood sugars make her feel sluggish, tired, achy, irritable and even nauseous – the feeling has been likened to having “the flu.” We treat high blood sugars with more insulin. High blood sugars are bad because they are linked to the complications of diabetes: cardiovascular disease, retinopathy (eye disease, blindness), neuropathy (nerve damage) and kidney disease. Think we don’t worry about that?

We worry about her being in school and away from our watchful eyes. We worry about her being away from us at all. We worry about her sneaking food – all too common at some point with children who have diabetes – as I discovered 3 days ago when I moved the couch and found sixteen empty fruit snacks wrappers.

We worry about her A1c – a quarterly finger-stick test that measures glucose exposure over the previous three months. This is like a mini progress report, to see how well she is maintaining her blood sugars – even though clearly they are not something we can control all the time, we self-critical parents often measure our success at fighting this disease with the A1c.

We worry about her annual blood tests – about her cholesterol levels and thyroid and Celiac panel. Diabetics are at increased risk of developing Celiac’s disease which, for all intents and purposes here, requires serious dietary changes – already a preoccupation – to a gluten-free diet. Think that’s easy?

And someday, in the blink of an eye, we will have to worry about the hormonal changes of puberty, which will present a whole new set of blood glucose challenges. And beyond – ultimately her growing up and out of the house, being on her own to manage her diabetes without us.

You’re handling it so well. You’re an amazing mom. Well, maybe so. I appreciate it when people say so, but in truth every day is a challenge with an already challenging personality – and every day my own personal demons try to challenge me to feel I actually am doing a good job. Some days feel like immense failures, others I remember the optimist I am and smile through the tantrums and the food wars. It is my job to take care of her, to teach her how to do the things I do, and show her how to live with a positive, I-can-do-anything attitude. Yesterday I wanted to run from the house screaming. Today, I’m smiling my exhausted smile and taking her outside to show her how beautiful life is.