A co-worker looked at me funny today when I mentioned that I was going to lunch, but what I really wanted to do was take a nap. To try and explain, I mentioned that I had only gotten a few hours of broken sleep last night because Sugar Boy’s sugar has been crazy high lately. He asked, “So, what? Is the insulin pump not working well for you guys?” He was not being sarcastic… he truly wanted to know. But in that instant I was SO frustrated. Frustrated that people just DON’T.GET.IT. I didn’t say much, I just got out
of there.
As I was driving to lunch I realized I handled that question completely wrong. I realized that I should have stopped… explained… and educated. As a result, the following “note” to my un-named co-worker was born:
Dear Co-worker,
Thank you for asking today about my son. I realize that I sort of blew you off earlier as “just another person that doesn’t get it” when you were asking about Sugar Boy. As the mama of a type 1 diabetic, it is part of my responsibility to raise awareness to what the disease is REALLY like and I realized after I left for lunch that I fell horribly short of doing that when given the opportunity with you today.
So, that being said, let me fill you in:
Before you can completely understand the symptoms I am about to describe to you, you need to know the definition of type 1 Diabetes. I have taken the following from the JDRF website:
"Type 1 Diabetes occurs when the body's immune system attacks and destroys certain cells in the pancreas, an organ about the size of a hand that is located behind the lower part of the stomach. These cells -- called beta cells -- are contained, along with other types of cells, within small islands of endocrine cells called the pancreatic islets. Beta cells normally produce insulin, a hormone that helps the body move the glucose contained in food into cells throughout the body, which use it for energy. But when the beta cells are destroyed, no insulin can be produced, and the glucose stays in the blood instead, where it can cause serious damage to all the organ systems of the body.
For this reason, people with type 1 Diabetes must take insulin in order to stay alive. This means undergoing multiple injections daily, or having insulin delivered through an insulin pump, and testing their blood sugar by pricking their fingers for blood six or more times a day. People with Diabetes must also carefully balance their food intake and their exercise to regulate their blood sugar levels, in an attempt to avoid hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, which can be life threatening."
The second thing you NEED to know: When you have a child with Diabetes there are NO rules. Diabetes doesn’t follow rules.
For the first two or so years (can be longer, can be shorter – no rules, remember?) after someone is diagnosed with type 1 Diabetes they go through something that is loosely referred to as “the honeymoon period.” What that means is that the pancreas continues to produce some insulin in sporadic and unpredictable amounts. This makes the disease especially difficult to manage as you never know when that is going to happen and send them low (a blood sugar under 80 is considered low for Sugar Boy).
Now, that is not to say it’s all smooth sailing after “the honeymoon period.” There are plenty of other factors that determine the amount of insulin needed…. such as growth spurts, hormones, and metabolism, all of which are fluctuating constantly and therefore constant adjustment is needed to the insulin therapy being given (whether by multiple daily injections or by insulin pump). We strive to keep Sugar Boys blood sugar between 80 and 150. However, what you don’t understand is that to achieve that ALL OF THE TIME would take coordination and luck equivalent to a average person juggling six balls in the air while balancing one legged on a beach ball suspended 100 ft above ground on a tight-rope. It’s pretty much impossible for someone who is not trained for the circus. As parents of a diabetic, we do our best to become our kids’ pancreas. But unless you are the real thing…. we just cannot achieve that same level of perfection. To explain further, please check out my friend Reyna’s post, here.
The immediate dangers associated with type 1 Diabetes are terrifying, especially to a parent. Low blood sugars can result in seizure, coma and death. There is a syndrome associated with type 1 Diabetes called “Dead In Bed Syndrome”. It’s exactly what it sounds like… a child goes to sleep at night, at some point during the night, their blood sugar crashes, and they die in their sleep. This happens. It’s scary. And it’s the reason that Sugar Daddy and I are up at least once, usually twice every night to check Sugar Boy’s BG. We sneak into our sons room, we dig his little hand out from under his pillow or covers, we prick his finger and we wait with baited breath until the number appears. HOPING that he is not low. If he is low, we then sneak back out – grab a sugar tablet or juice box (depending on how low he is) and sneak back in. Most of the time he never wakes up – he eats the sugar tablet or drinks the juice in his sleep. Then we wait…. Re-check his blood in 15 mins or half an hour (this is all taking place somewhere in the realm of 12 to 4 am, mind you)… and MAYBE if we are lucky, and his BG has come up to a safe level, we can go back to bed. That’s IF we can sleep at that point. That’s when we don’t lay there thinking “what if” – What if I had slept through the alarm and not checked? What if I had not caught it till morning… would it have been too late by then?
That’s for the lows…. If he is too high (above 200) then we have to administer insulin to bring that number down to a safe range. Why safe, you ask? When a person’s blood sugar is too high, they produce a chemical called Ketones. Kidshealth.org provides that “glucose (a type of sugar) is the body's main energy source. But when the body can't use glucose for energy, it uses fat instead. When fats are broken down for energy, chemicals called ketones appear in the blood and urine. This can occur when not enough food has been eaten to provide glucose for energy, or it can occur in Diabetes, when the body can't use glucose normally.” When ketones get too high a state called Diabetic Ketoacidosis (DKA) can occur. Untreated, DKA will lead to coma and eventually, death.
There are also long-term dangers to consider. Diabetics are in danger of numerous complications later in life. A few worth noting are damage to internal organs, loss of eyesight, and neuropathy. You have no idea what it is to look at your son and wonder if he will experience some or all of these.
Part of learning to control your child’s blood sugar means learning their “pattern”. Insulin amounts needed per meal are never the same. There is something called the carb to insulin ratio. More often than not, the ratio is slightly different for every meal. It’s up to us parents, with the help of our kids’ pediatric endocrinologist and diabetic care team, to figure out what that ratio is for each meal and snack they have throughout the day. Once that is figured out (assuming it does not change… which it can) you then have to measure and calculate the number of carbohydrates in EVERYTHING that goes into your child’s mouth. The ratio will change as they grow and as their metabolism changes, so it’s up to us to keep up with that too. That’s one part of the “pattern”. The other part is figuring out their basal rate. A normally functioning pancreas does not just produce insulin when you eat… insulin is produced and distributed continually. So, for that reason a basal insulin must also be given. Basal rates change CONSTANTLY… again, determined by growth, metabolism and other factors. Because I can see your eyes starting to cross we won’t go into insulin sensitivity factors for this lesson… just know that there is indeed one more piece of the “pattern” that has to be determined and perfected in order for it all to work “normally”.
Did you know that exercise also burns sugar? So when you have a 4 yr old…. And they eat a good healthy dinner, and you figure all the carbs exactly, and you give them their insulin and then they decide to chase their sister for 20 minutes after dinner… guess what? You just over-dosed them. Because now, both the insulin given AND the exercise are burning that sugar simultaneously. And that results in a LOW.
And while we are talking about that – let’s talk food. Food has carbs, right? Yep. Carbs are carbs and all carbs are the same, right? Nope. We are just now finding out that whole grain carbohydrates react completely differently in Sugar Boys body. They send his sugar soaring. We also now know that he can have pasta during the day… but not for dinner. If he has it for dinner, his BG will be high most of the night and then fall rapidly around 4am. And let’s not even talk about marshmallows… as far as I am concerned they are from the devil. Try telling that to a 4 yr old, though. He doesn’t care that he has Diabetes. He doesn’t care that his sugar will take mom and dad on a roller coaster ride all night long… he just knows he REALLY wants that rice krispy treat, darn it! And because we strive to keep him as “normal” as possible – we let him have it (within reason) and hold on tight… cuz we know it’s going to be a wild ride. He has other food quirks, too… some of them we have crossed paths with, some we have yet to learn.
And lets not forget what happens when the poor kid dares to get a cold (which he has had this week)!! All hell breaks loose… literally. Blood Sugars soar, and remember that nice little lesson above about Ketones? Yep, those little buggers raise their nasty little heads then too. A simple cold can easily land your baby in the hospital. Think about that and thank God for your nice healthy pancreas the next time you have the sniffles.
Now imagine… finally learning as much as you can about all of this to actually keep your child alive…. And then imagine the stress of sending that child off every day to be taken care of by a stranger at school. A stranger who does not know all these things, all these quirks and in addition to your child has 20 other children to manage. That kind of stress is completely draining.
And truthfully - this was just a quick lesson... there really is so much more to cover. Like what its like to lay your son out on the floor every three days... apply lidocaine cream, and pray it works so that he doesn't feel the insertion when you change out the cannula for his insulin pump and the sensor for this continuous glucose monitor. Seriously we are talking needles here... the kind that make grown-ups flinch.... and my 4 yr old regards them as "just part of life." When I finally do sleep at night I drift off knowing that my little boy is wise beyond his years because of a disease that threatens his life daily.
You ask why I am tired? Well, if you still need to ask then you really are one of the ones that “just doesn’t get it.”
Signed, Your Co-Worker
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