Arden's Big Blue Test

The walk begins, CGM says 183

We decided to do the Big Blue Test during Arden's 7th Jdrf Walk. Arden woke up in the morning after being a little low overnight, she ate a banana as we were packing for the walk and then bolused appropriately. Normally I wouldn't treat a morning low with such a carbtastic food choice, but we were in a hurry and needed to get Arden's BG up so we could get out the door for the walk. With no pre-bolus to help battle the banana I expected a BG rise to happen in a short time, and as you can see on the DexCom graph (above), that's exactly what happened.

The next BG hurdle came as we waited for the rest of our walk team, and the soft pretzel table beckoned our son Cole. We Cole returned, I watched as Arden's eyes became fixed on the doughy confection. "Dad, can I get a pretzel?". Arden returned with a giant, carb infused, pretzel. I didn't even bother trying to pre-bolus because Arden couldn't decide how much she may eat. I told her to just go at it, and I'd figure it out when she was finished. At 10 AM, just as the walk was beginning, Arden announced that she had eaten as much as she could, which was well over half of the pretzel. I took my best guess at how many carbs she had, closed my eyes, and bolused away. Then we walked...

One hour and fifteen minutes later we stopped on the last leg of the walk to play by the water... Arden's CGM read 189 (image below). I know you are seeing a ton of people holding up their CGMs and meters before and after their Big Blue Test work outs. I know most show a decrease in their BG from just 15 minutes of activity, but this is even more amazing then that, and I'll show you why. I can almost guarantee that without the exercise that Arden did her BG would have been in the mid 300's, if we were lucky. Look again at the few hours prior to the end of the walk. A banana with no pre-bolus, a soft pretzel only 30-45 minutes later, again with no pre-bolus. These two food choices should not only have driven up Arden's BG, but decimated her BGs for the rest of the day. But look what happened...

 CGM says 189 after 75 minutes of walking, even with all of those carbs

The rest of the day and night followed suit.

Before lunch, 2 hours since walk start.

12.5 hours since walk began and after Chinese food at 7PM!

Check out the overnight graph that goes from Chinese food to waking. I made no overnight basal adjustments and gave no bolus.

Arden took The Big Blue Test to help The Diabetes Hands Foundation in their effort to send $100,000 in diabetes relief to places in need. In the process we learned that not only does moderate exercise help to control Arden's blood glucose, but it can provide a full day and night of BG stability. The experience also gave me a lot to think about regarding my own activity level.

I hope you take the Big Blue Test right now, you don't have to be a person living with diabetes to benifit from the activity or help the effort, just click the link. I'm very glad that I did!

New plan for school and a sweet daddy daughter moment

Arden was on the longest play date of her life yesterday. She went to her friend's house around four in the afternoon to swim and ended up staying until ten that night. I've never left her alone before this date but I wanted to use this opportunity as a practice run for our new school day management plan.

Arden was originally just going to swim and come home but our results were so good that she was able to expand the plan into dinner and playtime afterward. She and I co-managed her diabetes by text and phone with no help from adults on her end. Interestingly, her tone while we spoke on the phone was more confident and mature then normal. Almost like she put her big girl pants on when she was thinking about type I - which was very inspirational!

For the first three years of school Arden has visited the nurse every time that her diabetes needed tending to; before and after meals, activity, for highs and lows and so on. Those visits, while necessary and also very helpful to her maintaining a steady blood glucose level, took quite a lot of time away from her school day. 

Thanks to a law that was passed a few years ago in New Jersey, children are allowed to test their blood glucose in the classroom where we live. I have been waiting for the time in Arden's maturation where I felt comfortable that she and I could co-manage her type I over text/phone without an adult present to double-check her steps. I decided at our last 504 meeting that third grade was the time to give this idea a try. Since then we've been adjusting our at home management routine to mimic this reality and last nights play-date was our first official test run. Arden doesn't of course think of all of this in the same way. That is, she was just on a play-date and not aware that I was testing my theories. 

I was so happy with how smooth the evening went that I had no trouble extending the date twice as the evening progressed. When Arden returned home at the end of the evening she was pretty hungry and so she had a late-night snack that I covered with insulin, perhaps too completely considering the amount of swimming she did. Around four thirty in the morning all of her activity from the day caught up to her and she experienced a low BG. 

When I checked her DexCom CGM it said 'low' and the graph indicated that she had been dropping slowly but steadily for the last two hours. When I tested her with a finger stick she was 42. I set a temp basal for an hour that eliminated her basal insulin and brought her a juice box. 

I spoke softly to her to let her know that someone was in the room and when I saw a bit of life on her face I began to repeat, "your blood sugar is pretty low Arden, let's drink some juice". After the third or fourth time I spoke she waved her arm at me in a sleepy but annoyed fashion and then sat up, she looked at her clock and then in the sweetest voice you can imagine said, "good morning". I handed her the juice box and she began to drink, in between each long sip she would open her eyes just enough so that she could see me in the glow that my iPhone created. She smirked each time in a loving, not joking way and then bumped the tip of her straw into my nose. After a number of sips (and bumps) she tried to hand the juice back to me but I needed her to take one more drink. After that last sip she said, "okay daddy I'm done, going back to sleep now... thank you".

I told her that I would sit up for a while to make sure that her BG leveled out and she replied, "sounds good, I love you". I told her that I loved her too and adjourned to my room with a great big smile on my face. Then I busied myself on Twitter and read some emails to stay awake.

I am going to be blogging extensively about Arden's new management process at school over the first few months of the school year, I hope that you find those posts helpful as we move towards a more independent lifestyle for Arden. It should be interesting to say the least. Arden will be permitted to keep a cell phone with her in class and she will be contacting me directly when she tests, eats, feels dizzy and more. We are going to try and eliminate as many visits to the nurses office as possible. I'm very thankful for the open-minded way that Arden's school, teachers and nurses are approaching this change. I am sure that it is difficult for them to try something that is so outside of everyone's norm. It's very exciting to be stretching these boundaries for Arden and the other children that live with type I.

Exercise and type I diabetes blood glucose control

Arden followed in her brother's footsteps last week when she tried out and was selected to play on our town's all star softball team. Yea Arden! The girls have been practicing each night since and I am learning more about blood glucose control before, after and during exercise then could have imagined.

Her second at bat.

First thing I learned is that all of Arden's activities from the past don't put nearly the strain on her system that an intensive two hour practice/game brings to her. Arden experienced a latent low in the early hours of the morning that followed her first practice. It was nearly eight hours since that practice began when her BG suddenly dropped. I couldn't cut off the fall by suspending her basal so I woke her up to drink a juice box. Normally I can fend off lows at night with a temp basal, this was different, a more powerful drop. I was awake and ready for it because I expected it but if I hadn't been, there is no telling how low she may have gotten.

So the next night I was ready! I kept her BG a little high before bed and didn't cover a small snack after practice. This turned out to be a winning combination. Night two went well.

On the third night I tried to mimic the success from the evening before but it turned out that a new site on her leg wasn't working the way I expected. When I combined keeping her BG a little high with a small snack and a site that wasn't up to snuff, I got a high BG that wouldn't come down easily. Hindsight has me wondering if the leg site was perhaps less effective because of the large amounts of running that she has been doing, as they normally work very well.

After I moved the OmniPod to her abdomen the next few nights went as planned, however I had to put quite a lot of effort into keeping things balanced. These last few weeks haven't just proved to me that strenuous activity can cause a low but that high BGs effect athletic performance. I noticed that if Arden's BG gets too high that her speed seems to diminish (I hope that you can share your experiences with me in the comments about this). Normally a very fast runner, Arden couldn't perform as she usually does if her BG began to rise above 220. I think that I also saw a decrease in her hand-eye coordination during this elevated period.

Last night before her first game I tried very hard to keep her BG around 100 before game time. I added carbs as the game was about to begin, a few slow acting and about 15 grams of juice. I was hoping to keep her steady without going too high during the game. I was able to do this with a lot of help from her DexCom CGM and she never went above 190 but wow was it a lot of work... though totally worth it to see her have such a good time.

This first game didn't just teach us more about type I diabetes, it also gave us our first look at Arden's competitive nature in a sporting moment that she regards as very important. Arden took this game seriously, she had fun but playing well was definitely high on her list of priorities. It goes without saying but we are very proud of Arden and the extra effort that is required for her to participate makes that pride shine just a little brighter.

Your child can definitely play sports at a competitive level with type I diabetes, that fact was never in question. All you have to do is give the moment the forethought and preparation that it requires, it'll be tough at first and you may spend a night or two battling lows but once you have a system in place it's not unlike the rest of your days with diabetes. You can do this.

Have fun out there!

One of the two outs Arden recorded in her first game.

Basal the spike away

Standard Disclaimer: I'm not a doctor, please read the disclaimer at the bottom of the page. Always speak to your doctor, especially before trying something that came to me while I was in the shower. 

Stubborn Highs: Arden's blood glucose can rise and at times be resistant to returning to 'normal'. Happens to all of us. I bolus and wait but nothing, so I bolus again and sometimes again. It's around the second bolus when I begin to wonder, "is the site bad", "maybe the pump has been on too long", "did I grossly miscalculate carbs", a person can go batty trying to decide what has happened. It's likely that before you (or I) can ever come to a conclusion, the BG in question will return to 'normal' or head in the complete opposite direction. Either way, the whole unsightly mess is forgotten becasue you're busy chasing the next problem which leaves you no closer to understanding why this happened or figuring out how to avoid it next time.

Sound familiar? 

This type of BG struggle isn't just associated with stubborn highs: Breakfast or meal time spikes can also lead to an urge to bang your head on a nearby firm surface. Over the last few months I've been experimenting with an idea that came to me in the shower one day and I'm seeing a lot of positive results. I'm going to do my best to explain without being boring or confusing... Please note that what follows will only work for pumpers because it involves manipulating basal rates... sorry MDI and pen users!

Using increased temp basal rates in place of a portion of your bolus

Arden is a really good eater, that is that she eats healthy foods most of the time and in acceptable portions. If the kid has one 'vice' it's that she likes a bowl of Fruit Loops in the morning - just one cup. The BG devastation that this handful of cereal visits unto Arden was, in the past,  terrible. Her BG would rocket to 400 or more after a bowel of the colorful rings. The Loops would seem to laugh in the face of a pre bolus and administering more insulin before the meal or an extra bolus after could not penetrate their sugarific force field. Once I even thought that I saw Toucan Sam give me the finger as I put the cereal box back in the pantry.

I hate this song and dance. I hate that Arden can't have a flippin' bowl of cereal once and a while and I double hate the feeling that I live with when she eats cereal and her BG goes crazy. Foods like this don't just send her BG too high, they ruin most of the rest of her day. I'm full aware that cereal isn't a good choice for my diabetic daughter but I'm not writing about that today. Today I am talking about how, with the help of an insulin pump, we can all fight meal time spikes associated with not so great food choices and manipulate stubborn high blood glucose values more easily and smoothly.

My formula

Things you need to know to follow along: 

• Arden's basal rate is .30 in the morning and much of the day.
• For a serving of Fruit Loops she requires 2 units of insulin.
• Giving say 2.5 units for the cereal does not change the trajectory of her BG.
• If I go higher (say 3 units) the spike is not effected enough, topping out at 350 and Arden's BG will plummet between the three and four hour mark.

Time to visit me in the shower where I am apparently about 20 IQ points smarter then I am anywhere else. (I've heard that the hot water on the back of your neck may be the reason why).

I was in the shower one day pondering life and Arden's breakfast BG spikes when I first began putting the pieces together. Overnight Arden's basal rate is .20, if she's high I have to put her basal back to .30 for a bolus to have the desired effect... I wondered what would happen "if I increased the basal beyond .30", could I bring a high BG down in a safer way, steadier perhaps (because she's sleeping) then if I just bolused? I tested my idea at the next opportunity and not only did a significant temp basal bring down the high overnight BG but it did it with less insulin then a bolus would have required and the drop was smoother, it's 'landing' less erratic. My inner mad scientist was intrigued and I had just unknowingly found a big piece to the puzzle that is stopping mealtime spikes.

Proof of concept: Arden sits down and begins eating on a school day at 8:20 am. Today at 7:45 am her bg was 140, I bolused for the first 15 carbs of her upcoming breakfast, which was 1 unit or half of what a serving of Fruit Loops requires. This is a pre-pre bolus, I find that after a long night of no boluses and a decreased basal rate it can take a little longer for insulin to begin working (maybe this is part of the morning insulin resistance many experience?). At 8:10 am I bolused again this time for the remaining 15 carbs but I reduced the 1 unit of insulin by .30 (the equivalent of an hour of Arden's basal rate). Last, I increased her basal by 95% for one hour. (OmniPod won't do 100%), giving the last .30 of the 2 units via an increased basal rate. The temp basal in conjunction with a significant pre bolus seems to be the key to eliminating a BG spike. Pre bolusing alone won't effect a severe spike enough because you can't perfectly sync the insulin peak with the food spike so the BG rises quickly, drops suddenly and often bounces back up. However, when you add a pre bolus to a significant temp basal, the basal acts as a constant drag on the spike and the two together win out.

Breakdown

15 carbs or 1 unit, 40 minutes before breakfast - 7:45am

I can prebolus that far off in this situation without an issue because her basal was .20 all night and she's resistant in the AM, so the insulin is a bit slower to respond first thing in the morning. Plus, with Apidra, Arden rarely experiences significant BG falls so prebolusing this far out feels safe. Additionally, I have 70 points in her BG to play with and the cereal will be releasing sugar into her blood far before she gets too low... (having a DexCom CGM doesn't hurt either).

Another 15 carbs 15 minutes before the meal (withholding the equivalent of an hour's worth of basal)- 8:10

This insulin won't begin working until after Arden begins to eat, so I'm not worried about stacking. Two boluses also mean two insulin peaks while the Fruit Loops are trying to spike her BG. 

Double the basal rate for an hour to complete second 15 carb bolus.

This .30 will work better then if it was given as part of the bolus, why? I don't know, I told you, I'm not a doctor... it just does - Maybe I know this because hot water in the shower makes me smarter. btw, more then an hour of the temp basal is too much and results in a fall in the 3-4 hour range. Doubling for an hour is perfect.

Result: At 9:30 am Arden's nurse called... Arden was 240 by her CGM. The CGM indicated 2 arrows up (which was why she was with the nurse) but the double arrows only lasted for about 4 minutes. So my little science experiment took a double arrow up event that in the past would have sky-rocketed to 400 (or more) and held it to a 4 minute double arrow that never went above 250!

Arden's BG (by the CGM) at 11 am (pre recess) was 145 diagonal down, she drank 2 ounces of juice (7 carbs) and went outside to play. When she returned her BG at 11:30 am (post recess, pre lunch) was 129 by a finger stick, 140 and steady via the CGM. 

I choose and extended bolus for lunch because she was having a bagel. 60% of the 2.20 units at 11:30 am the balance over an hour (to combat the slow breakdown of the bagel). Her BG was 145 three hours later before snack time.

Summation

It goes without saying that what works for Arden won't work for everyone but after months of using this method I am 100% comfortable telling you that what I wrote here is well worth speaking to your endo about. The concept of using a temp basal to complete a bolus holds many possibilities beyond what I wrote about here today. Slow to break down foods and high carb meals for example are also good places to try this method. I'm using a temp basal as part of Arden's bolus on almost a daily basis. It is also invaluable in bringing down stubborn high BGs and getting a BG lower during sleep, avoiding the fear of a sudden drop and without going too low.

I wish you all good health, luck and steady BGs. I'll do my best to answer any question if you have them.

Cured

I remember the two saddest days of my life since Arden's diagnosis very vividly. They came at a very inopportune time. It was six months after Arden's diagnosis which was two months after I fooled myself into thinking that I had mastered type I diabetes. These days began strangely because Arden's blood sugar was eerily steady and a little on the low side. After breakfast her BG got significant low, almost as if she didn't need any insulin. She ate more to stop the BG fall. The food worked but there was no spike at all, which of course was strange. In the moments after I got her BG stabilized I thought, "maybe they were wrong and she doesn't have diabetes".

Having that thought, was the beginning of the longest, saddest two days that I've lived through since Arden's diagnosis. I knew enough about type I to be sure that I was wrong but everything that was happening said that the insulin wasn't necessary and it certainly seemed like she wasn't diabetic anymore. By the end of that day I wasn't giving injections for meals and I had to skip her pre-bedtime Levemir. I didn't sleep much that night, I was waiting up and testing. Waiting because I was sure that her BG was going to suddenly rise - but it never did. It just stayed between 90 and 107 all night.

This trend lasted through the next morning and then I did something that I knew I shouldn't, but had to do. I needed to tell someone that I thought Arden didn't have diabetes. I called my friend Adam who is also Arden's pediatrician. When Adam got on the phone I said something that I still remember to this day, "I'm about to say something that I know is wrong but I have to say it... I need you to set me straight and then I'll get off of the phone". Bewildered he asked me to proceed.

"Arden doesn't have diabetes. She hasn't needed insulin in over a day... is it possible that she was misdiagnosed?"

I knew that she was most likely experiencing a honeymoon period but I needed someone to tell me. With each moment that passed, I was convincing myself a little more that Arden didn't have diabetes. After a long pause Adam said, "no, she was not misdiagnosed, this is a honeymoon period... Arden has diabetes".

I thanked him, there was some awkward silence and then we said goodbye. I went into the bathroom and cried. The remainder of the day was emotionally excruciating, it felt like a cruel combination of every bad day that I had ever lived through.  Later that afternoon we ate dinner and Arden's blood glucose jumped to over 400. I actually felt better when it climbed so far, so fast. 

Today, after so many years of living with type I diabetes, I have seen countless anomalous days. Highs, lows, insulin resistance, sudden drops, more unexpected stuff then I could have ever imagined. I'll never know for sure what happened over those two days. What I can tell you for sure is that it's happened many times since then, including yesterday. Never again to the degree of those days (not needing any insulin) but there have been days when Arden only gets 15% of the insulin that she normally does and her BG never goes above 120.

Last night as we got ready for bed Arden's BG began to jump and then drop, I could see it on her DexCom and finger sticks confirmed what the CGM was saying. Arden's BG was 72 and then 125, then 93 and then 160. It was rolling up and down like a small boat on a very large ocean - this went on all night. The next morning things seemed to be back to normal but sometime around noon they went right back into that tiny boat. Lunch required much less insulin then we thought and then her BG hovered between 70 and 96 all afternoon. Never wanting to waste a day that Arden doesn't need insulin we went to dinner at the Hot Wok Cafe for Chinese. It was there as we looked over the menu that I did something that I've never done before...

I wrote this post to show how something that once seemed so terrible will one day feel very different. Today, we don't blink an eye when Arden doesn't need much insulin for a day or so. We refer to those days and their events with one word, "cured". Now when the cured days come I don't dream of a misdiagnosis or call Adam and I definitely don't go into a bathroom and cry. I just manage them as best that I can and get Arden a nice meal with a ton of carbs.

In my next blog post, I'll tell you how badly our meal at the Hot Wok Cafe went... I may call that post, 'Whisper Down the Lane' or perhaps 'Confusion at the Hot Wok Cafe'.