Ketones

Now that we're sort of comfortable in our diabetes routine, life threw us a curve. It was a small, but messy one: a stomach bug that's going around. It was the first time since Benny's diagnosis of Type I Diabetes that we had to deal with a "regular" illness. I'll spare you the details; let's just say we were very worried about Benny becoming dehydrated and since he wasn't eating much, also about giving him insulin. When a diabetic kid has a sick day, you have to check for something called "ketones." Ketones occur when you don't have enough insulin; your body starts to break down fat for energy and acids build up in your blood. If you don't catch it it can lead to Diabetic Ketoacidosis (DKA) which, if not treated quickly, can lead to coma or even death. Pretty scary stuff, but that's why you have to keep on top of it and check for the ketones early, before they build up. The test is simple (but be warned, I'm going to talk pretty frankly about some bathroom stuff here and throughout the rest of this post). You have your child pee on a test strip or you can collect the child's urine and dip the end of the stick into the "sample." Then you check the colors in the end of the test strip to a color chart to determine how severe or "large" the ketones are. Here's a great link for a more complete explaination, including one of blood testing for ketones: http://www.childrenwithdiabetes.com/d_0n_030.htm Once again, though, we find a simple test is anything but when you're dealing with a two year old. Benny is close to potty-trained, but still in diapers. So how do you get him to pee on a stick? When we were in the hospital, during his diagnosis, they checked him for ketones by putting cotton balls in his diaper and then squeezing the cotton balls out(!) onto the test strips. He thought that was very funny. I probably shouldn't write this, but after three days of that, he started pointing to his diaper when we changed him, saying "balls!" So I tried it at home. First time around, he pooped. So much for those cotton balls. That's when I realized I was out. Who runs out of cotton balls? I checked every bathroom, every closet - nothing. So what to do? Diapers are way too absorbent now to release any fluid (gross, but I tried). I asked Benny every half an hour if he wanted to go. No, no, no. Finally, at bath time, success! And even better - no ketones! The test was negative. The problem? Benny thought peeing in a cup was so much fun, he wants to do it all the time!

Highs and Lows

One of the keys to managing diabetes is checking blood sugar levels. As I've explained before here, it's usually done by pricking a finger then using a test strip and a meter to get a number. There's usually a range of blood sugar levels your doctor gives that's right for you. Too high and you need more insulin. Too low and you need more glucose, or sugar. Very simple explanation of a fairly complicated matter. You can see what a meter looks like and how you check glucose levels in a pretty good presentation at Medline Plus: http://www.nlm.nih.gov/medlineplus/ency/presentations/100220_1.htm In the short term, it's much more dangerous to be low than to be high. Low blood sugar means your brain is deprived of glucose. Symptoms start out with trembling and sweating and at dangerous levels can result in seizures or coma or even death. High blood sugar is more dangerous over a long period of time; it can lead to eye, kidney, nerve and blood vessel damage. Our job, as parents of a two year old with diabetes, is to keep Benny as close to a blood sugar level of 80 to 150 as we can. We check about 6 times a day. My five year old, Lea, treats the meter like it's part of game show. Once you put the test strip in, it counts down from five and she's always rooting for a good number (no whammies!!). So far, I think we've done pretty well, but there have been two instances that stand out. The very first came less than a month after Benny's diagnosis. We were on a long-planned vacation, at my parents' house in Florida. Along with my sister and her kids, we went to a sort of indoor amusement park. Benny had eaten a relatively normal lunch and it was already past nap time. We were thinking about hitting the road, when Slade noticed Benny, while still running around and having fun, seemed slightly uncoordinated. He was getting sort of clumsy. We scooped him up and took him to a quiet place to check his blood sugar. As I was holding him, he kept falling asleep. Since it was way past nap time, I wasn't that worried. Well, after we checked him, you bet I was scared. His blood sugar was at 32. He wasn't trying to sleep - he was about to pass out! Luckily, he was lucid enough to suck down a quick juice box, which we always carry. Slade ran to a nearby snack stand and threw a 10-dollar bill at the guy for another bottle of juice. (He gave us the change later. Thanks!). Meantime, I had coaxed Benny into eating a fruit snack, which we also always carry, and he was coming around. By the time we got into the parking lot he was back up to a safe 95 and half an hour later he was chatting away, eating chicken nuggets and happy as could be. It took me two days and several conversations with our doctor to calm down! The second incident was yesterday. Benny woke up for his afternoon nap sweaty and pale. He was happy to see me but put his head right down on my shoulder when I picked him up. We always check him after a nap and the magic number was.... 54. He's been that low before, but usually 4 ounces of apple juice (15 carbs) is enough to bring him right back up, in about 5 minutes (we follow that with another 15 carb/protein snack, like peanut butter crackers). This time, it took a longer and it was pretty scary. That pale, shaky appearance lasted almost half an hour. In fact, I gave him some more sugar (sweet-tarts, a favorite) just in case. Of course, then a while later, his sugar was through the roof with one of the highest readings we've had in a while. We gave him a reasonable amount of insulin, a good dinner and lots of water (that helps). His next set of numbers were great. What amazes me is how good he seems to feel after just a little bit of sugar or a little bit of insulin. 15 grams of carbohydrate isn't really that much and you should see the teeny units of insulin, it's really just a couple of drops (granted, Benny only weighs 30 pounds). We're also in what's called the honeymoon period of diabetes, when Benny's pancreas still has 15-20% function. We don't know how long that will last; it could be weeks or maybe even a year or two. We're told the end of the "honeymoon" won't really mean a change in how we check or treat Benny, though. We'll still be watching that little countdown, cheering for a winning number.

Body Piercings

Two year old Benny has started checking his own blood sugar. Every parent is proud of their kids' milestones, I just didn't expect my son's to include piercing his own skin. At least not before he became a teenager. Blood sugar testing is one of the main tools in treating Juvenile Diabetes. Briefly, you use a automatic lancing device - it looks like a pen and has a small needle inside - to poke a hole in the skin. Usually, you'll stick the finger tip, but some newer models can test the palm, arms or other areas. Touch the drop of blood to a test strip and the monitor gives you the blood sugar number. The number tells you what you need to do next - too low and the child needs some form of sugar, fast. Too high and more insulin is needed (this is a very rough explanation). We do this test at least six times a day. Benny has decided he can do this himself. He unzips the case, loads the test strip, puts the pen next to his finger and presses the button. Of course, since he's two it doesn't go very smoothly but we do get it done and I like that he's enthusiastically involved in something so important to his care. The insulin injections? Not so much. Benny gets 4 to 5 shots every day. It's a small needle but it's still no fun. You don't need to any special medical training to give these shots - they just go right under the skin and you usually give them in the back of the arm, the back upper thigh or in the tush. We were pleasantly surprised how agreeable Benny was to the shots for the first few weeks, but that's over now. The books tell you to give the child a choice of sites, to give him some control. Yeah right. Benny's choice is always, "No." Or he lets me rub the alcohol wipe on the site then says, "all done!" and runs away. For the past week or so I've had to actually hold him down to give him the shots. Luckily, I've gotten good enough at it that it doesn't take very long. It doesn't seem to hurt much; he doesn't cry or act upset after the shots. In fact, he usually jumps up and laughs, gives me a kiss and goes back to whatever he's been doing. It's the moments before the shots that are giving us fits. Listen, I know this could be a lot worse. I'm not looking for pity. I just want to find ways to keep a sense of humor and bring Benny up with one as well. I don't think I'm going to have to work very hard on him for that - he immediately realized he could gross out his big sister by showing her the blood on his finger after the sugar check. Then, he learned that if he kept squeezing his finger, he could "finger-paint" on my walls!

Carbs R Us

Thank you, Dr. Atkins. Yeah, I know most of you aren't eating heaps of bacon anymore, but the popularity of the Atkins diet has changed the way the big food companies think about carbs. Knowing about carbohydrates is crucial for people with diabetes; it's the food group that has the biggest impact on blood sugar. Simply put, we base our son's insulin dose on how many carbohydrates he's eaten. It's much easier to figure that out now that every packaged food out there has a clear FDA approved label with the carb count right on it. Yes, we try to eat lots of fruits, veggies and proteins (and thankfully my kids will) but if we want a packaged snack, like goldfish crackers or pretzels, at least we know what we're getting. Our doctor also gave us a great book - The Calorie King Fat & Carbohydrate Counter - that lists just about every food you can think of, including restaurant food. When we first got Benny's diagnosis, we made what I imagine is a common mistake. We tried to feed him only low-carb foods. You see, every time he has more than 15 carbs, we have to give him a shot. Who wants to stick their kid more than they absolutely have to? So we switched from his normal waffle or cereal breakfast to eggs & sausage. We tried teeny portions of pasta and served big slabs of protein. My husband, Slade, spent two hours in Harris Teeter looking for low-carb snacks (olives? pork rind?). Only one problem: Benny's two. He's not exactly into the whole low-carb thing. And we didn't like the idea of turning our family's diet upside down. My daughter, Lea, is 5 and both kids enjoy pretty good diets for their ages. Couscous is a favorite, they both love chicken, beef and fish, they'll eat loads of Italian food (I'll tell you about our restaurant, Rotelli, another time!). I'd love for my daughter to eat more veggies, but Benny will munch on broccoli, peas or even cauliflower. I won't lie - they also love sweet-tarts, fruit roll ups (what is that? colored plastic?), and my daughter could eat pounds of chocolate. But we try. Anyway, we decided to keep to our regular way of eating and just try to keep snacks to less than 15 carbs - that way he doesn't need an extra shot. Sure, there are exceptions. On his birthday, he had a nice big piece of cake in the middle of the afternoon and sometimes he just wants to eat more than usual. The last thing I want is a hungry toddler; kids need calories and healthy fats to grow. (In fact, a new study shows diabetic toddlers may not be getting enough carbs & calories to keep up with their growth. More in the Journal of the American Dietetic Association) Considering one of Benny's first words was "fruit snack," I think we're doing okay.

Thank You!

Where do I start? It must be with thanks.

Thank you to everyone who emailed or called after I shared the news last month that my son's been diagnosed with Type I Diabetes. They used to call it Juvenile Diabetes and it doesn't get more juvenile than Benny. The doctors gave us the news December 2nd, just one month shy of his second birthday. It means his pancreas doesn't work and never will. His body doesn't make insulin and he needs injections to stay alive.

Thank you to the incredible doctors and nurses at Carolinas Medical Center - especially our overnight nurse who is a Type I diabetic herself. I can't tell you how much it meant to me that first night just to meet a successful, healthy, adult living with Type I (and she's a mom! and she's expecting!).

Thanks to our pediatric endocrinologist, Dr. Mark Vanderwel, who made me feel perfectly normal every time I called him with another question. When you've never, ever given a shot and suddenly your two year old needs 4 or 5 a day, trust me there's a lot to ask. He moved! Did he get all the insulin? I pricked my finger (again)! I may have mixed up the long-acting and short acting insulin vials! No wait, I didn't. Will Tylenol make his blood sugar go up? Does running around and falling down laughing, as only a two year old can, bring his blood sugar down? I love Dr. Vanderwel. He's got patience and a sense of humor (he needs both to deal with me) and he's a great doctor.

Thanks to my amazing husband, Slade. When we got home from the hospital, he threw open the cupboards and sprang into action. He set up "diabetes central" with all our supplies, everything organized, in our kitchen. We have a chart now that shows the carb count of all our kids' favorite foods. Pizza goldfish? 15 carbs per 40 fishes. Three cheese tortellini? 33 grams in 19. String cheese? Less than one carb per. Slade's set up a whole system to keep track of Benny's food, blood sugar, his shots. My Excel hero.

Thanks to my friends at WBT who didn't blink when I needed some time off. To Al Gardner who came over to play with Lea & Benny. And only Jim Szoke could make me laugh about the challenge of holiday parties by making it sound as if I threw myself onto the cupcakes like they were grenades.

Thank you to every parent of a child with diabetes who emailed me to tell me that while things will never be the same, we will be okay. Thank you to all the grown-ups, diagnosed with Type I as kids, who shared stories of how far treatment has come.

This blog will be a place to talk about my family's experience with diabetes, but also, I hope, a chance to share a little bit more about myself and about Charlotte’s Morning News. Let me know what you think.