Are You High? (365:10)

Until recently, Dylan didn't experience distinguishable or telltale "signs" when his blood sugar was high. His low blood sugars have always been apparent to him and to me, but highs not so much. Even today, there is really only 1 symptom that accompanies every high.

Walking to the local library recently, we noticed something wasn't quite right with Dyl. He was a bit quieter than usual, and not his lighthearted, cheerful self.

He was focused and deep in concentration; so much so, that he didn't see this sign and proceeded to walk right into it, bonking his head on the bottom. Normally, he would laugh something like this off, and we would laugh along with him. Side-note: I realize it may seem mean to make fun of someone who has just potentially hurt themselves, but Dylan has a very particular sense of humor, plus I knew he wasn't hurt, just caught off guard because he literally didn't see the sign coming.

No, no joking around today. Today he got defensive and bitter, snapping at his sister and I for giggling, accusing us of making fun of him. Totally out of character for him.

I didn't think too much of it at the time. Maybe he was tired, or a little warm (we've had a hot summer and he reacts easily to the heat and humidity). But then on the way home, we crossed a street together, his sister and I turned left to continue down the next street and Dylan kept walking straight. He was headed in a direction that would have taken us further from our destination, and he normally would know this. 

After about 10 yards or so we realized he wasn't with us anymore and called out to him, again chuckling a little. This time he got really mad at us and then it dawned on me.

"Are you high?" I asked him - a legitimate question to a child with type 1, but also a bit of an inside joke between him and I because he's entering high school next week and is very anti teen drug use (again, his sense of humor...).

"I was 10.4 (mmol/l (187 mg/dl)) when we left the house." 

We had been walking for about 15 minutes. Ahhhh, that explains it.

Anyone else experience big mood swings with elevated blood glucose levels?

Swimmer's High (365:7)

Swimming is one of Dylan's favorite activities, and he's a great swimmer to boot. But for someone with type 1 diabetes who wears a non-waterproof insulin pump, managing blood sugar while in the water can be a challenge.

We've been lucky in the past and the carb-burning exercise of swimming has always balanced out the lack of insulin. So much so, that on vacations in past years, we've let Dyl disconnect from his pump for 3 to 4 hours at a time, without an increase in bg afterwards. No pre or post swim bolus required - the swimming simply replaced the pump. Easy peasy...

But diabetes, being like Murphy's Law, throws a curve ball when we least expect it. When we think we have it all figured out. When we try to use almost 8 years experience to base a decision today. It shows us that even after something has worked time and time again, it won't necessarily work today.

Between increased insulin needs, the early onset of puberty, a higher body weight, and possibly dozens of other factors, swimming no longer burns enough carbs for Dylan to be disconnected for any length of time. We learned this the hard way yesterday when he hit the pool with friends for an afternoon swim. 

After 3 hours in the pool diving, flipping, swimming, and playing in deep water, he came home with a blood glucose level higher than I've seen in a long time. A whopping 20.6 mmol/l (370 mg/dl)! A big bolus (6.25 units) and a 30 minute wait later, we faced a 24.8 mmol/l bg (446 mg/dl) and a pump telling us Dylan had too much active insulin to bolus further. A manual override of another unit bolused, and another 45 minute wait, and bg was down to 9.6mol/l (173 mg/dl) and still dropping. 2 hours post-swimming we were down to 6.4mmol/l (115 mg/dl) and I finally started breathing normally again.

On days like this, being a d-mom is extra difficult. It's so easy to focus on the negative and worry about the damage that's being done to his heart, kidneys, nerves, or eyes when his blood sugar is high. It's easy to feel like a failure as a parent and a caregiver, for not keeping my son away from harm. It's easy to let diabetes win.

But this 365 project is about staying positive and not allowing diabetes to be all bad all the time. Because like it or not, he will have type 1 diabetes for his entire life, and I don't want him to think of it as a death sentence, a disability, or a hindrance in any way. I don't want him to mope around focusing on how diabetes gets in the way.

I want him to understand that living with type 1 diabetes can be a challenge, but there is absolutely nothing he cannot do. I want him to accept it, to own it, and to know that when bad s*#t happens, we pick ourselves up, brush ourselves off, and we get ready to take on the next challenge.

The Go-to Low Treatment (365:5)

Yes, it's chalky, tastes horrible, and leaves a powdery mess on everything it touches, but nothing is more effective at treating Dylan's lows than good ole' Dex. So when Dylan woke up feeling low, after sleeping out in the backyard in a tent with his sister and the neighbors' kids, he did a quick test and self-treated with Dex. That's my rock star!

Um, yeah that's a blood smear on the tester's plastic cover...

Celebration of Light SWAG (365:3)

Saturday night marked this year's finale of Vancouver's Celebration of Light, so we headed downtown to take in the action. A simple trek, however, it is not. With hundreds of thousands of spectators converging into the West End, early arrival is critical to get a decent viewing point. The performance begins at 10:00pm, so we arrived downtown at 8:00pm, parked 2km from the site, and walked the remaining distance. Knowing we'd have to walk 2km back to the car after the show, I was a bit worried about Dylan's bg. He's an active kid, but doesn't usually walk this type of distance late in the evening.

Warning: SWAG'ing ahead: A 20 minute walk at 10min/km will burn approximately 12 carbs, plus playing at the park will burn a few more. Special solution for tonight? A summer treat! We grabbed a box of 4 Klondike Mint Chocolate Chip ice cream bars (28g carbs per bar) and each had one. Post walking/firework bg: 8.2mmol/l (147.6mg/dl). I'll take it!!

Pre-fireworks sunset and a shot of the show

The End of My Love-Hate Relationship with Running

At the end of 2012, I decided to make some huge changes to my physical health. While I've always considered myself healthy, I knew I could feel even better, so I made 2 major changes for 2013 in terms of diet (I now eat Paleo almost exclusively) and exercise. An active person for the most part, my love-hate relationship with running has gone on too long.

For years, I have run in spurts. I'd sign up for a race, train (usually not even close to enough), run, take some time off (long enough to lose all of my fitness), and repeat. The result? I never saw any significant improvements in my running speed because I was always starting from square one; I had no consistency. The other problem with this method? No maintenance; I was always building mileage. That meant that the runs were always hard because I was pushing my body to run further or faster than before. Plus my dietary habits were causing spikes in my blood sugar that would result in brutal lows during my runs, causing me to actually fear running. No more.

Starting in January I changed the way I was running. I ran for fitness, for fun, and for stress relief, not with the goal of a specific event or race. I set goals for weekly and monthly mileage, and for number of runs per week, and I made sure I hit them week after week after week. My goals were ambitious, but not so much that they were hard to attain. January's goals were to run 75km, and to be able to run 5k without walk breaks. February's goal was 100k. March was also 100k, but with a focus on speed during the week, and on the long slow distance run on the weekend. April's goal was 125k, and by then I knew I was ready to run a 10k race and beat my previous best time. I also registered for a half-marathon May 5th with the hope of setting a PR there too.

Paleo eating has been massively helpful too. I diet of low glycemic index foods, protein at every meal, and a ratio of 35/40/25 carbs/fat/protein, keeps my blood glucose steady all day, including during runs. And with a focus on what I put in my body and when, I have drastically decreased recovery time and eliminated my need to "carb load" before long runs. My energy level is stable, by appetite is strong, and my stress level has never been lower.

Overall, these changes, albeit small, have totally transformed the way I think about diet and exercise, especially about running. For the first time ever, I wake up in the morning excited about running. It's gone from being work to being entertainment, and I celebrate and enjoy every little improvement. Finally, I have found a way to run that I know I can stick with!!

Skating Along

The ice surface has been so smooth and sheen, free of cracks or dents, that we didn't even notice the big open hole ahead. Blindly we skated forward, bearing down, picking up speed, hurtling towards the gaping pit of freezing cold water. Before we knew it, we were submerged; soaking wet, struggling to get out before falling below the surface forever.

No, we didn't really fall under the ice, but this metaphor seems perfect to describe our family life with diabetes lately. Diabetes here has been uneventful, routine, common even; each day predictable and manageable. No lows, no highs, just a whole lot of 6's and 7's.

We were enjoying the skate, getting comfortable, and even temporarily forgetting that ice couldn't be perfect forever. Inevitably D would rear it's ugly head and we would fall. And that we did last night when Dylan's pump ran out of insulin in the middle of the night.

My own fault really, I should have refilled the reservoir earlier. I should have understood that with the stomach bug Dyl's has had the past couple of days, his insulin needs would have been higher. I should have been on top of it. But I wasn't.

Around 3:30am his pump alarm went off, signifying the end of the insulin and in his half-asleep state he heard it, but ignored it. By the time he woke up this morning his bg was 22.4 mmol/l. A quick site change, refill, and bolus, and we waited for the new insulin to do its job. We waited, and waited, and waited some more. Half an hour later we tested to discover a bg of 24.1 mmol/l. Crap. Another bolus, another wait, another test, and finally it started to come down.

A sudden and effective reminder for us to never get too comfortable with D because it has always been, and always will be, anything BUT predictable.

Sleeping Over with Diabetes

The dreaded sleepover; it can be a d-parent's biggest fear. Putting your trust in another parent, let alone one who doesn't know your child as well as you do, can be scary. Terrifying in fact. At the same time, Dylan having as normal a life as possible is critically important to me. I have always made it a rule to never let diabetes get in the way of his doing anything and this has forced me to relinquish a bit of control and trust him to take responsibility for his diabetes when I am not with him.

Sleepovers were one of the last things I allowed. For years, I would permit friends to sleep at our house, but the idea of Dylan staying somewhere else was simply not an option for me. Even his dad's house and grandparents' houses frightened me. Over time, however, as he has become more and more responsible with his own diabetes care, my trust in him has increased accordingly.

His first few sleepovers at friends' houses were with his best friend, who lives a block away from us, and whose parents are very familiar with diabetes and Dylan's care. They know to remind him to test frequently, they know how to treat his lows, and they recognize his low symptoms. And when they're not sure about something, they call or text me. In short, I am comfortable when Dylan is at their house.

Last Friday night, on the other hand, marked the first time I've allowed him to sleepover at the house of a friend whose parents (in this case a single mom) I don't know well. Dylan desperately wanted to stay there, and though every part of my being wanted to say no out of fear, I really had no rational reason for denying him this privilege, so we came up with a plan. Dyl was to text me every few hours with bg readings, especially before eating anything, and if anything was out of the ordinary, we would address it, and bring him home if necessary.

I dropped him off at 4:30pm, with a blood glucose level of 6.2 mmol/l. His pre-dinner text revealed that he was 5.1 mmol/l, and another text before bed showed he was 7.8 mmol/l/. At home, we would bolus for 7.8 mmol/l, if it was at any time other than before bed, as that's a tiny bit high for my liking. But we've always kept a marginally higher "acceptable" range for bg readings immediately before bed because Dylan has had nighttime hypoglycemic seizures in the past, though not in years. His nighttime bg levels have been very steady as of late, and he wakes up if his sugar nears 4.0 mmol/l, so I let him skip the middle of the night test for the sleepover. Yes, I really other parents would think I'm crazy for skipping a 2:00 am check, but with no variation in activity for the day, and bg readings steady for the previous few days, I felt confident that he would be fine. An early morning text showed a bg of 9.0 mmol/l, which he followed with a breakfast bolus for the french toast he was about to eat, and an insulin correction for the 9.0 mmol/l, all on his own. That's my guy; a true rock star when it comes to managing his diabetes.

So am I more comfy with sleepovers now? Not a chance. Yet baby steps are getting us there slowly but surely.

Round 2

January, and now into early February, will go down as the sickest month for Dylan since diagnosis. For years, he has been the child that rarely got sick. He had a near-perfect attendance record at school, and got colds and flues much less often than his brother or sister. It was something I was constantly thankful for, because those rare times he did sick, he'd get VERY sick, usually requiring hospitalization with intravenous fluids to keep bg levels from plummeting. So the less illnesses, the better.

Well, we've gone full circle this season. After a week long achy feverish-coughing flu in mid-January, he returned to school for a few days, only to leave at recess last Tuesday vomiting. The stomach flu had arrived.  More vomiting that day, followed by no appetite, and moderate stomach pain for 2 days. By Friday, he felt up to returning to school, and then (remember, hindsight is 20/20) proceeded to have a very active weekend. Friday night he attended the Vancouver Canucks game with his dad (eating stadium chicken fingers and mini-donuts for dinner), then Saturday he played in a 70 minute soccer game, followed by a 90 minute performance class (singing). Immediately after the class we raced home so that he could don his snow gear and go tubing with a dozen of his classmates (followed by hot chocolate and popcorn). Sunday morning he lounged around the house, and walked up to a friend's house, before they went swimming for 2 1/2 hours in the afternoon.

I tried to balance out the day with a healthy Paleo dinner consisting of wild salmon pan-fried and served over an avocado remoulade, along with mashed sweet potatoes, and steamed vegetables, but I think the damage was done. He simply did too much too soon. When I woke up at 7:00 am this morning I had the nagging feeling that something wasn't right with him, and went to wake him up.

"How are you feeling this morning Dyl," I asked, expecting a response related to his stomach.

"Low," he replied.

Surprised, because he never wakes up low in the morning, I grabbed the kit and did a quick check while he was still in bed. 2.7 mmol/l (48.6 mg/dl)!! After 4 dex tabs and a 15 minute wait, he was up to 6.0 mmol/l (108 mg/dl) and complaining about how much his stomach hurt. So here we are again, home from school nursing a persistent stomach ache.

Paleo Revisited

Last summer, on my flight home from a conference in Miami, I read Doug Willen's book, entitled "Quantum Paleo." It was the first literature I has read about the Paleo, or Caveman, diet, and it opened my eyes to a whole new way of thinking about food. I immediately jumped onto the diet without really evaluating the why or how, and quickly discovered that it simply wasn't the right time in my life to make a change of that magnitude. But the idea has been pecking away in the back of my mind ever since, so over the past few months I've been doing more and more reading on the Paleo lifestyle, exploring recipes, and talking to others who eat Paleo.

Over Christmas holidays I decided to start slow. Immediately after Christmas, I eliminated gluten from my diet, and stopped drinking dairy products. Within a few days I felt a dramatic change. All the bloating and fullness in my abdomen disappeared, my energy level increased, I started sleeping better, and I no longer felt tired and burnt out mid-afternoon every day. I also noticed benefits when exercising. I was running further and faster without getting as tired, I was recovering more quickly, and I was less sore in the hours and days following a strenuous workout. All that from eliminating wheat (I never ate much rye or barley anyway, so gluten free for me is mainly wheat free)? It couldn't be that simple. But it appeared it was.

Within a couple of weeks I realized the jump to Paleo would not be too hard. The only other staple grains in my diet were rice and corn (my husband is Mexican and we eat a lot of corn tortillas), and rarely eat refined sugar, so how hard could it be? Well, we'll see. Yesterday I began my new Paleo eating and am very excited to see what this new lifestyle change will bring!

Sickie-wickie

Yup, Dylan's sick. The nasty flu bug that seems to be hitting everyone lately. Today is day 4.

It started Friday when we were at the endo appointment, though at that time it was only a stuffy nose and sore throat. By Saturday morning he was vomiting (only once thankfully), weak, achy, coughing, and had a fever ranging from 101 to 102. With no appetite, bg levels were the biggest concern, but they held steady for once! Sunday was more of the same all day. He managed to get up long enough to have a shower and change into clean pj's, but that was the extent of his activity.

Today I am hoping he is on the mend. Fever is down to 99, but nothing else has changed. Appetite still absent, weakness still present, and the cough is getting nastier and nastier.

I have been texting back and forth with the endo all weekend, updating her on his status. With his bg in range and no difficulty holding down fluids, however, there is really nothing she can do for him. We just have to wait this one out and hopefully he'll be back on his feet in the next couple of days.

Question for Type 1 Parents

The NHBPM prompt for Day 19 asks us to pose questions to other patients. 

We have been riding a carousel with Dylan's diabetes care for quite a while now and I desperately want to get off the ride. Around and around and around we go, repeating the same problems over and over. Now I am asking for help/advice/tips from the DOC.

For as long as I can remember Dylan has been pushing for independence with his diabetes care. He has always shown a high level of interest in doing his own testing, entering carb counts for meals, and calculating his own correction boluses. I oversee everything, and do all of his site changes and setting adjustments, but for the most part, he handles the day to day stuff on his own. This system has worked for us. Until recently.

Just over a year ago, Dylan started forgetting to test from time to time. He'd come home from school and we'd realize he'd neglected to test for his morning snack, but gone ahead and eaten it anyway, resulting in a slightly elevated bg at lunch. I'd catch the oversights early, and the problem would go away. Then a few weeks later it would happen again, and again, and again. 

Then last November we adjusted the custody agreement between Dylan's dad and I, implementing a week on-week off schedule. Great for the kids, not great for diabetes monitoring. The forgetfulness with testing became more and more frequent, and without me hovering and reminding Dylan constantly to test, missed bg tests at school became the norm rather than the exception. Upon uploading the pump data, I would immediately see the problem, talk to Dylan about it, and it he would be more diligent at school, at least temporarily.

The cycle has continued on and off since and we don't seem to be getting anywhere closer to a permanent solution. His testing habits at home are great, but school is an ongoing problem. He doesn't have any support worker or aide anymore, and I can't be there to remind him. He has always been very good at recognizing highs and lows, too, so when he feels good, he is more likely to forget to test.

So my question is...

How do other parents ensure that their tween/teen tests at school? What system/precautions do you have in place?

Exercise Induced Lows

Today's NHBPM prompt asks for a descriptive account of a memory. I've deviated a bit from the task, and written more of an evolution of a problem, rather than a specific, one-time memory.

In case you're not familiar with my blog, or my story, let me start off by stating that I do not have diabetes. My 11 year old son, Dylan, was diagnosed with type 1 diabetes in November of 2005, at the age of 4.

I, however, have struggled with hypoglycemia for as long as I can remember. Throughout my childhood and teenage years, low blood sugar was a regular occurrence for me. If I skipped breakfast, my blood glucose would tank by 10:30 or 10:45 am and I would start shaking uncontrollably until I ingested fast-acting sugar. I slowly learned the importance of breakfast, but then in my twenties, the causes of my hypoglycemic episodes expanded. Suddenly I couldn't handle large amounts of simple carbs anymore. I had to eat protein at every meal and keep simple carbs to a minimum. Over time, it became an easily manageable problem.

In my late twenties I took up running and at first everything seemed ok. But as my endurance increased and my runs consisted of 10-25km each, I was faced with a new cause of hypoglycemia: inefficient carb-loading. For the first few years of my running career, I could get away with a pre-run snack of a banana and a whole wheat bagel with peanut butter. And I would carry a bottle of Gatorade, and a tube of dextrose tabs, with me at all times to cover my regularly occurring mid-run low. That worked for a while.

Then last year the lows became more extreme. Suddenly the recovery got slower and I would feel weak and shaky for half an hour after treating the low, making the rest of my run near-impossible. At this point some people might have considered giving up running, but I love it. And not just for the exercise; running is my stress relief, my time to myself, and my time with nature. So I gave up the nature part and started doing all of my runs on my treadmill. Boring, yes, but still effective.

In May 2012 I got involved with the 90 day challenge and everything changed. The shakes I was drinking daily left my blood sugar stable all day and my lows stopped happening. Suddenly I could run outside again, plus I could run faster and further than ever before. It was amazing! I went 6 months without a hypoglycemic episode...until today.

I upped my exercise regime quite substantially this week, adding some intense strength training, and speed intervals to my running. The increase was clearly too much too fast, and my body responded with a brutal low. It kicked my butt. I had to stop moving, take in 45 grams of fast-acting carbs and wait half an hour before feeling somewhat better. I had almost forgotten how scary it feels during that waiting period. Almost...

Oh, the Weirdness.

Day 2's NHBPM prompt is, "Write about the weirdest thing about your health condition?"

Upon first reading this prompt, my initial reaction was, "what isn't weird about type 1 diabetes?" At its most fundamental, it's a disease that is essentially the same in everyone (an ability of the pancreas to produce insulin), yet it shows itself so differently from day to day and person to person. What works for one person may not work for another, and what works for someone one day may not repeat itself the next.

So I thought I would pick one aspect that is perhaps more frustrating than weird, but still a regular issue in our house. Exercise.

Last year and the year before, Dylan played ice hockey. A grueling, strenuous, and highly skilled sport that demands a level of fitness and commitment that can challenge any child, and parent, let alone one with type 1 diabetes. Yet we managed. After some trial and error with temp basal rates (and different rates for practices than games), we finally found a system that worked for us. MOST of the time at least.

Then this fall Dylan decided he wanted to switch back to soccer instead, so that he could play on a team with many of his friends.

Back to square one we go. While hockey and soccer may appear similar in terms of cardiovascular fitness and physical exertion, according to Dylan's blood glucose rates, they are quite different. Well, at least we think they are. Every time we think we've got the temp basal for games figured out, his post game bg is totally different than the previous game.

So many variables are involved - what position he plays (he'll run much more playing midfield than defense, for example); what the weather is like; how much playing time he gets (dependent on the number of subs available at each game); what time of day the game begins (is it right before lunch, or 2 hrs after lunch, for example)?

After the first game of the season we were convinced we were on to something! He ran a 70% temp basal starting 15 minutes prior to the game. He drank a 750ml 10 carb electrolyte drink instead of water, and had 4 orange wedges at half-time. His post-game bg was 4.7mmol/l. Not bad. The following game I wasn't there and he forgot to run a temp basal altogether. He drank water and his post-game bg was 11.9. Wtf? Without the temp basal his bg should have been low, not high.

And so it has continued every game since then. Up and down, up and down. The weirdness of type 1 diabetes...

Tweak, tweak

Last week I wrote about the problem we were having with Dyl constantly running slightly high (Trends Don't Lie). As a result, we upped a couple of basal rates in the hopes that it would at least curb the 2 daily spikes he was experiencing. And we were right, it did combat the spikes. However, it still left him elevated throughout the day, all day.

Fast forward to today, when we were back at the diabetes education center for a check-up. In addition to doing Dyl's quarterly A1c, weighing and measuring him, and talking about changes and updates in diet and exercise routine, the endocrinologist took a really hard look at Dyl's pump data and decided to make some pretty substantial changes. In fact, she increased every single basal rate. Background note: Dylan has six different basal rates which vary considerably at different times of day. For example, because he is prone to hypoglycemic seizures in his sleep, he takes less insulin at night. For some reason, which we really have no idea, he requires more than twice the amount of insulin between 2:30pm and 6:00pm than he does at any other time of day. The other 4 rates fall somewhere in between. (This ability to vary insulin delivery over a 24 hour period is one of the MANY reasons I love pumping over MDI.)

I've said this before, and I'll say it again and again: I love our endo and I trust her explicitly. So when she says increase all the basal rates, I do it. And I did, but not without fear. This is, by far, the most drastically we have ever altered Dylan's settings, and a couple of the settings were increased by as much as 0.2 units per hour. In an MDI user that injects insulin two or three times a day, 0.2 units may not seem like much, but in an 11 year old pumper, who boluses additional insulin for food, it's a lot. Fingers crossed that these changes get his bg levels back into ideal range, at least most of the time.

Trends Don't Lie

Up and down, up and down. Just when I think I have pump rates set so that "in range" is a reasonable goal for the immediate future, diabetes goes and changes everything again. Call it Murphy's Law, call it karma, call it whatever you want, I call it living with diabetes. At it's best, it's manageable; at it's worst, it's a roller coaster, but it's always uncontrollable. And the more we try to control it, the more elusive that control becomes.

After some pretty decent bg readings for most of September, we have seen some consistent highs for the first half of October. And not "high" highs, which are so much easier to correct, in my opinion, with a nice, big, well-measured bolus. No, we've been dealing with what we call "low" highs in our house - those pesky high blood sugar levels that don't appear to be have an obvious cause. The ones that hover just a little above the "ideal" range; too low to continually correct, to high to ignore. The 11's were our battle for Thanksgiving. Not just one, not two, not even three, but a solid 48 hours of blood glucose readings ranging from 11.0 mmol/l (198 mg/dl) to 11.5 mmol/l (207 mg/dl). Furthermore, Dylan felt fine. He didn't feel high and wasn't showing any symptoms of hyperglycemia. It didn't seem to matter what he ate, or how many times we corrected the highs, the next reading was another 11. We changed infusion sets, tried a new vial of insulin, double checked against multiple meters and the result was still the same...11s. It became a bit of joke with Dyl after a while, as he'd test and then say to himself, while waiting for the number to appear on the meter screen, "anything but 11."

What does one do in that situation? Personally, I am always hesitant to adjust basal rates because so many things can cause a temporary increase in blood glucose levels. Maybe Dylan was under a bit of stress, or fighting the early stages of a virus. Perhaps he had a decreased amount of exercise for that 48 hour period. Or maybe it's the beginning of puberty - something I've been dreading, from a diabetes standpoint, for a while now. The point is, it's so hard to determine what causes a rise in bg, that basal adjustments are not always the best answer.

So I did what I usually do in this situation, after I've tried the obvious solutions (bolus, increased water, bout of exercise, infusion set change, new insulin, different meter) and haven't seen success - I look to the numbers to tell me. After all, numbers don't lie. And while a single number, or even a day's worth of data, can't always provide a clear picture, trends over time can reveal a lot. So I sat down at the computer, uploaded the last two weeks of pump data, and stared long and hard at the information, looking for trends, patterns, or anything that would shed light on the situation. Sure enough, I quickly discovered a number of problems. Twice during the day, for the past 2 weeks, Dylan's bg levels had been quite elevated (prior to the 2 days of 11's). It was always at the same time each day, and always a similar level of elevation. So I increased the basal rates for the few hours prior to those 2 times, in the hopes that it would help to curb the spike.

I then texted the endocrinologist to let her know that I had uploaded new data, and increased two of Dylan's six basal rates. I also asked if could she please let me know if any other changes were required. Yup, after almost 7 years of parenting a child with diabetes, I still ask the endo about every change to pump settings. And I probably always will.

Just Keep Swimming

Diabetes and exercise don't always mix well. While yes, exercise does wonders for the body and can provide significant help in managing blood sugar levels, the unpredictability when the two are mixed is enough to drive anyone crazy. 

Just this morning, Dylan started a week of intensive swimming lessons. 45 minutes of near non-stop lengths, practicing all strokes. The only breaks to the lengths are to tread water. I literally has no idea how his blood sugar was going to react but I (perhaps stupidly) tried to base my estimate of previous experience. Ya - anyone with type 1 diabetes or who cares for someone with type 1 knows very well that what works one day does NOT necessarily work the next. But you have to start somewhere, right?

A year and a half when we took Dylan to Mexico for 10 days, we balanced exercise (swimming) with insulin pretty well. Awesomely well, in fact. Turns out with Dyl at that time, that the glucose he was using, via energy he was exerting in the pool, almost perfectly balanced the increase in his blood sugar levels while being disconnected from his pump. Basically, this means he went pumpless for most of the day, every day, and the effects on his blood sugar were minimal. He'd wake up in the morning, test, bolus and eat breakfast, and remove his pump. He'd swim from 9:00 to about noon, test, put the pump back on to bolus for lunch, remove it again, and swim from 12:30 to 4:30 or so. Then he'd resume wearing his pump until the next morning. Seems crazy, yes, but it worked for him because he was so active in the water.

So fast forward 20 months, and add about 25 pounds in body weight. Pre-pool test revealed a bg of 8.1 mmol/l (145.8mg/dl). He wore his pump right up until the climbed into the pool. We didn't run any temp basal rates in the hour or two prior to the lessons, and he didn't have any extra carbs. Did I expect the same results as in Mexico? No. I expected a low, and I was worried because Dylan's telltale warning sign of a low is what he has termed "weak-knees," meaning that his legs feel like they're going to give out at the knees. Of course, in the water he wouldn't feel that because he wasn't standing. I stayed in the viewing area the whole time, armed with dex tabs in the off chance he started to feel low. 

Post-swimming test result? 12.9 mmol/l (232.2 mg/dl). Go figure...

Evaluating the Numbers

Diabetes is a numbers game. We are forever chasing the elusive bliss of bg perfection, a better A1c, or day of spot on carb counting. Some days the planets align and all seems okay; other days we chase highs and lows via the diabetes roller coaster. But how do we evaluate success? And failure, for that matter? For many the quarterly A1c test is the ultimate report card, for others reporting is a daily process.

I fall somewhere in the middle. I look forward to (or dread) the quarterly A1c because I like the overall picture it presents. It gives us a "big picture" idea of how Dylan is doing, and while I try not to take it as a reflection on my ability as a d parent, let's face it, it's pretty hard not to. My problem with the A1c is that it doesn't take into account what is going on in Dylan's body each and every day. It's doesn't identify areas in which pump settings need to be adjusted, or carb ratios altered.

For this information I turn to the pump data itself, and while I have heard from countless people that they hate the Medtronic CareLink reports, I quite like them. I upload pump data every 2 weeks (or that is the goal anyway) and I go through the numbers with a fine toothed comb, looking for patterns, problems, or anything out of the ordinary. Without fail, I always learn something new; no 2 uploads are ever the same. In fact, that seems to be the rule with diabetes - as soon as things start to make sense, they change.

Over the past few months, one trend emerged over and over in the reports - Dylan was not testing enough. This has been an ongoing problem for us, and the one things we are continuously working on. Dylan is amazing about testing when he's at home, but regular testing at school has always been an issue, more so as he's gotten older.

The most recent upload, however, showed quite an improvement in testing, and more tests means a more accurate picture of what is really happening inside his body. So what did I learn this time? I learned that we need to up his basal setting almost across the board. In the 2 weeks of data, only 3 days did his average bg fall into the ideal range. The remaining 11 days it was just above normal. Was I surprised? At first, but then I took into account a number of things. First, it's been a couple of months since we made any pump adjustments. Second, he's growing, and has been eating a lot more lately. Third, hockey season is over, so his activity level has decreased a bit. Each of these factors, or all three, could be causing his bg to rise.

Without the reports, or a log of some kind, I would have to wait until our next quarterly A1c test and endo visit to find out this info and to make pump adjustments. But our next appointment isn't until the end of July, so that's a full month in which Dylan's bg could be running higher than it should, wreaking havoc on his body and making him feeling like crap unnecessarily.

So now what? We tweak. We increase basal rates a bit here and a bit there, and maybe increase carb ratios a tad. And we fire the data over to the endo for any additional changes. Then in 2 weeks we repeat the process. And we do it again, and again, and again, every couple of weeks, to ensure that Dylan's pump is giving the ideal amount of insulin to his body throughout every day.

The Mystery of Increased Insulin Use

Earlier this week I posed about how Dylan had gone through about 125 units of insulin in 48 hours - a first for him. His intake is usually pretty consistent, with daily insulin ranging between 35 and 40 units per day, so using over 120 units in 2 days is alarming. Was it a pump/tubing issue? Faulty insulin? Major growth spurt? None of the above actually.

The mystery was solved when we woke up Wednesday morning to find a sick little boy, complete with nausea, a stuffy nose, and nasty cough. He stayed home from school all day Wednesday and then tried to return Thursday, lasting all of 15 minutes (I dropped him off at 8:45am and he called from the school office at 9:00am saying he wasn't feeling well enough to stay). This morning he woke up feeling a whole lot better, though still not 100%.

In the meantime, insulin dosage seems to have to returned to normal. We've been monitoring closely, but BG levels have returned to "normal" at his regular pump settings. Thinking back, I can't recall having experienced this before, where insulin dosage increased by 50% in the couple of days leading up to an illness, but then returned to typical amounts during the illness. Anyone else noticed this before?

Poke Poke ~ D Blog Week, Day 3

Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

I opened yesterday's post with a small of things I felt I could do better, in terms of diabetes care. Today I'm picking one to share in more detail: Testing. 

For the most part, we are pretty good when it comes to testing blood glucose. But we're far from perfect. 

• Testing before meals and snacks: (almost) always. 
• Testing when feeling low: most of the time (sometimes we treat symptoms first) 
• Testing before sports/exercise: most of the time
• Testing during sports/exercise: sometimes
• Testing after sports/exercise: sometimes
• Testing when feeling ok and not about to eat: rarely

When I hear about people with diabetes who test their blood 12+ times per day, I think wow, that's commitment. Should we be doing that? Probably. Is what we're doing working for us though? For the most part. Is there room for improvement? Always.

We Made It!

Well, I survived. 11 days on vacation with his dad, and me having no control over Dylan's diabetes care and I made it. WE made it. Tomorrow they board a flight in Jamaica and return home with photos, memories, and a ton of pump data for me to analyze.

I can't say I haven't been absolutely sick with worry the entire time because I have. I have thought about about Dyl so much of every day, wondering how he's doing, how he's managing highs or lows, and how his carb counting skills are doing with all of the exotic food he's been exposed to. I've worried about the heat, the change in routine, and the extra exercise, not to mention the general worry about safety while he and his brother are in a different country without me.

Before he left, Dyl and I reviewed so many things, including temp basal rates (for heat and extra exercise), square boluses (for the all you can eat buffets), and pump storage while swimming (to prevent theft and to keep insulin cool). I knew he as ready; he went away with his school for 5 days in January and absolutely rocked his diabetes care, but the teacher in me had him review, review, and review again. I asked him to text me if he had ANY questions, and to update me once during the trip so that I didn't go completely crazy with worry.

Last Wednesday morning he called me, around 11:00am my time, or 1:00pm in Jamaica, ready to recite 5 days worth of numbers for me. Wow, what a trooper! At the time he called, I was boarding a tram to go up my local mountain and spend the day snowboarding with my daughter, so I asked him to give me the mini-version.

"Numbers have been good," he said. "A few 12's and 13's (216-234 mg/dl), but otherwise all in range. No lows." Three little sentences and I felt a massive weight lift off my shoulders.

"Are you having fun? What have you guys been doing?" I asked.

"Well, we went horseback riding yesterday, and this morning we went sailing and then jet skiing," he responded.

"Fun!" I said, "Liv and I are just about to board the tram to go skiing for the day, so I can't talk long."

"Aww, lu-cky," he said. That's my guy, always knowing how to warm him mummy's heart.

"Dude, you're the one in Jamaica!" I laughed.

That was the last I heard from him, but no news is good news. I can't wait to see him and his brother tomorrow!