A change in insurance has led to a change in insulin.
We've used up our stash of Novolog, and the first cartridge of Humalog in several years went in the pump 3 days before back to school.
Some people say they experience no difference at all between the two insulins. Some think Novolog withstands heat better. Maybe Humalog sticks around in the system longer. Humalog could be more likely to clog infusion sets. We switched to Novolog a few years ago because it was reported to kick in just a little bit faster. Some of the differences are detailed here, on T1D Living.
The key difference to us is that insurance will pay for Humalog now, and it won't pay for Novolog anymore.
There are too many variables here for this switch to serve as a scientific experiment. The change coincided with an already established need to make some pump setting adjustments. It also coincided with back-to-school, and with the hamster wheel which is marching band season. A couple of things do seem obviously different, despite the chaos.
What we've noticed for sure is a greater need to pre-bolus breakfast. That aspect feels familiar to me from our switch from Humalog to Novolog a few years ago. Breakfast, after which my daughter's bg had spiked significantly almost every day since diagnosis, became more manageable with Novolog. The Humalog is a little more sluggish.
I'd also agree that Humalog sticks around a little longer. It's hard to see during the day, but I'm noticing that the Dexcom graph's downward slope continues longer on the last-before-bed bolus, or for any overnight corrections.
Because we're changing basal rates anyway, based both on feedback from our last endo appointment, and on the schedule changes from the start of school, it's hard to tell what other differences there are. It won't be until we finish tweaking that we can see, for example, if the total daily dose went up.
Given my druthers, I'd say Novolog is probably a snappier, cleaner variety of insulin, and that it would be nice to go back. But in accounting for Humalog's more sluggish nature we're making adjustments that are working.
Humalog and NPH were the first insulins prescribed when my daughter was diagnosed. The glass-half-full part of me will note that Humalog's challenges are minor and manageable compared to the nightmare that was NPH.
We placed our initial Edgepark order in March. The details of that ordeal are here, if you'd like to read the beginning of this story.
I returned two of the three items in that shipment on April 11th, using the return label sent to me by Edgepark, because they were not items my daughter uses, nor were they the items prescribed.
I subsequently received a bill for the Verio Test strips I'd returned. When I called, the representative said to disregard the bill. Edgepark was in the process of 'billing the return' with our insurance.
Ignore it I did, along with a couple of subsequent, identical bills I received in quick succession.
Mid-summer, after another bill, I called and was told again to disregard it.
Fast forward to the beginning of this month. I placed an order for a new Dexcom G6 system.
I then received an email telling me I had an outstanding bill. I called and was told once again to disregard it.
Two weeks later, I followed up, since there'd been no word on the G6. They'd just processed the order with the doctor's prescription, I was told, and it would be shipping from the Ohio warehouse within 24 hours. It would be at my house by Friday via FedEx. It was very specific information.
I then received another bill, for a higher amount than the previous ones, and a subsequent email warning me that no further orders would ship until I had resolved my delinquent account with the Edgepark billing department.
So I called. Yes, I was told, they had 'billed the return' and refunded my account $63.60 for the test strips. I acknowledged that as a good start, but then noted that I had paid them $288, and that they were now sending me bills for over $400. It was an unproductive conversation which ended in the representative telling me she was sending March's whole order and subsequent billing back for a 'full review.'
So, did that mean my upcoming order would be cleared to ship? "Oh- yes - that wouldn't have been on hold anyway."
Today, still no word on the Dexcom, so I went onto the patient portal to check the status. There were 'urgent alerts' posted warning me that no further orders could be processed until I paid my outstanding bill of what was now two hundred-something dollars.
An hour phone call, piles of explanation-of-benefits and bills reviewed, and lots of math later I agreed with the billing representative that the current number was correct. In (very) short, the original billing on the one item I did keep (Dexcom G4 sensors) was also incorrect, not in my favor, and that error was reflected on a subsequent explanation of benefits in July. After the whole day's bills were sent back for review, my account was credited with the rest of the Verio money Edgepark owed me, in order to pay for part of the cost of the Dexcom sensors. I still owed the balance for those supplies.
I paid the bill then and there on the phone.
My daughter's Dexcom G6, the third person in so many weeks told me, is on its way. She's, once again, really looking forward to getting it. It seems highly unlikely to me that there isn't at least one more phone call involved in this. And then, of course, the next set of bills...
And if you have a choice to get supplies from someone other than Edgepark, do.
We visited the endocrinologist a couple of weeks ago.
My daughter's A1C was up a smidge, which isn't unusual at her end of summer visit. We do better keeping her blood sugar stable when her schedule is more predictable, as it is during the school year.
The numbers downloaded at the beginning of the visit from the pump and Dexcom covered the prior two weeks of blood sugars. One week was from vacation and the other was from the youth group mission trip. Both involved strange meals at strange times, late nights, periods of heavy activity at all different times of day and night, and at least during the second week, a few moments of stress.
There seemed to be a couple of patterns, but they could just have easily been a pattern of what happens when you follow a heavy, late lunch with a busy afternoon, an unusual dinner, a walk, and no 9 p.m. snack.
After talking things over, the endo said something like this:
Look- it looks like you need a little more insulin in a couple of different places here. You could tweak a couple of things now, like maybe this after-dinner spike, but maybe you don't want to do too much yet. Why don't you wait a week- get through band camp where you don't want a bunch of lows, and then once school starts look at these patterns again and make the adjustments. You know what to do. And hopefully by then you'll have the G6 which'll make it so much easier.
Band camp was, predictably, another week of unusual eating, busy schedule and extreme heat. It felt safer to run a little higher than what we'd ordinarily consider ideal.
School started last week with a weird schedule for the first day and an unexpected half day on day 2 due to a heat advisory, which was followed by a takeout lunch with friends. Friday night was the first marching band performance at the football game, preceded by a 4:30 p.m. dinner. This week will be slightly more predictable, so we'll see if some basal tweaks we made over the weekend make a difference. And we'll add more insulin for dinner. That was the one change we did make after the endo visit but it isn't doing the trick yet. No G6 yet either- more on that another day- but we've been managing T1D in a growing, changing child since long before any CGM at all.
We'll keep watching and adjusting. We know what to do.
We talked technology at last week's endocrinologist appointment. My daughter is using an Animas Ping pump and a Dexcom G4 CGM. The Animas can be serviced or replaced for another year before we'll have to switch to Medtronic for the last two years of its warranty. The Dexcom version we're using is almost obsolete, so we have to change something, but the question is, how much?
We could close our eyes and jump headfirst into a full switch to all things Medtronic. We would likely be transitioned to their 630G model which works with their Guardian brand CGM system and a Contour meter as a meter remote. This pump would suspend insulin delivery when low blood sugar is detected by the CGM sensor.
The low glucose suspend feature would be reassuring, especially for those few nights per year that my daughter spends away from us. On the other hand we've heard mixed reviews of the Medtronic sensors, in terms of accuracy and calibration neediness. We hear they're improving with each version, which is incentive to wait a while. There is already a more current Medtronic pump, which adjusts the basal rate every few minutes based on feedback from the CGM.. We wonder if we wait a year if we'll have the option of switching directly to their most recent version, whatever that is at the time, which would surely have more bells and whistles than the current offer.
Our other option is to keep the Animas pump for another year and upgrade to Dexcom's G6 CGM. The G6 requires no fingersticks for calibration, and can be worn for 10 days before changing the sensor. The CGM data can go straight to my daughter's phone, and be shared with us from there, or we can choose to use a receiver. The reviews of its accuracy are stellar.
My daughter is comfortable with the Animas pump, and super-excited about the Dexcom G6. So the plan is to move forward with those for the next year.
It feels like a piecemeal solution. But it's not a perfect world. Insurance and corporate deals dictate the diabetes choices we can make. We are destined to be Medtronic people.
Just not yet.
"Mom?" My eyes must have opened slightly, or I mumbled something.
"Something's wrong with my pump."
And then I was awake.
"It was beeping when it woke me up … booEEp, booEEp … but now it's dead. Nothing happens when I push the buttons. And it's hot."
It was the wee hours of the morning. We were on vacation in a cottage near the beach.
"Ok- let's see."
I got up and followed her back to her little room where we turned on a light and set to work.
Hoping the simplest explanation was the right one, I took out the battery, using a coin from the pile on her bedside table set aside for an expedition to the penny candy store. The battery was hot.
I inserted a new battery and screwed the cap back on. I prayed, thought good thoughts, and implored the diabetes gods for mercy. The pump would spring back to life. We would not, in the middle of the night, on vacation, have to go back to injecting insulin for the first time in 13 years.
Time stood still for an infinite moment and then, there it was, the familiar alien-like startup beep of the Animas pump. I confirmed, when prompted, the battery type, and the date and time, which were reassuringly still correct. Then, as the pump requires with every battery replacement, I set in motion a full rewind of the cartridge area. Knowing that the full rewind also signals the pump to perform a full system check I once again sent out pleas to the universe that a pump failure would not, please, be among our vacation memories.
The motor whirred. And whirred. And whirred. And then...
"beep!" Just the usual, friendly little 'I'm ready,' beep. I finished the process and my daughter reconnected.
Still more than a little freaked out, and now wide awake, I photographed every pump setting, not sure if my most recent records were recent enough. I tucked my daughter in and returned to bed where I lay; not at all optimistic that the crisis had actually been averted. I considered all of the options for obtaining a replacement pump if need be. I sorted out what I could remember about multiple daily injections. I tried to figure out what had happened in the first place. I got up twice to make sure her blood sugar was staying steady- that the pump was still working correctly.
In the light of day, with the pump working properly again, the explanation seemed fairly logical. The hot battery was familiar from times we've changed it after the 'I'm going to die in half an hour or less' warning. The initial low battery warning, indicating a couple of days' power remaining, had been visible on the pump for at least most of that day, my daughter said, and she'd planned to change it during the next day's site change. But it's possible it had been there longer, since we were in vacation mode and, as is our custom, paying less attention to diabetes than usual while enjoying vacation things. Or maybe the battery died a little faster than usual with all the extra use for vacation food. Maybe the pump alarmed for the full half an hour foretelling its imminent demise, and simply didn't wake my daughter from her vacation-induced deep slumber - we'd been out late and came home tired.
All that really matters is that the new battery continues to work just fine, a couple of weeks later, and we were able to enjoy the rest of our vacation.
Our family has experienced several turning points over the years when it comes to my daughter taking on increased responsibility for her care. To us, each of these has been a big deal. She can check her own blood sugar! She can troubleshoot enough to be left alone at a birthday party! She can count her own carbs at a restaurant with friends! She can change her own site! She can go away overnight! The list of these moments is long. For some families, this list doesn't exist at all because their kids were diagnosed at an age when they naturally took on all or at least most of these tasks independently from the start. For others of us, it's been and continues to be a long incremental journey.
Sometimes I feel weird, or even guilty, that I still help my daughter with her Dexcom sensor insertions or that until a couple of years ago I did almost all of her site changes. The little voice in my head nags, 'She's a teenager for goodness' sake- she should be doing all of this by herself. Other kids are doing it by 8.'
But if I step back and reflect on how we got here, it feels okay.
When she was diagnosed at 13 months old, we did EVERYTHING. Obviously.
Then around 3 she wanted to help...as many 3-year-olds want to do. It's the 'I can do it by myself 'age and we took full advantage. She learned to use the lancet and apply blood to the test strip. She learned to read the number on the glucometer out loud. She learned to gather all of the supplies for her site changes. She was in charge of separating the various wipe packets which come in perforated pairs of two. She also spent quite a bit of time taking care of the diabetes needs of her dolls and stuffed animals who, occasionally, also had to count carbs at tea parties, check their blood sugar or drink juice boxes.
By the age of 5 she knew how to use her insulin pump, with supervision and an adult counting the carbs. She knew to drink a juice box if her meter said she was low and to wait 15 minutes and check again before she could go back to what she was doing - again, with an adult around to support her.
In early elementary school she learned how to count and bolus for a simple snack like goldfish crackers or pretzels so that she could go to a friend's house after school.
If she WANTED to do it, we figured out how to make that happen. If she didn't want to, we didn't push.
She now, of necessity, knows how to do it all. And yet, still, I help if asked. Diabetes is a huge undertaking. For now, the least I can do is give her a hand filling the insulin cartridge if she has to do a site change in a hurry, or be an extra set of hands for the awkward Dexcom insertion. She's going to have to do it all by herself soon enough.
I have no official connection to Gatorade, and this is not medical advice, but marching band practice is well underway here, and I have stocked up...
Gatorade's low-carb G2 is my daughter's go-to drink for evening marching band practice.
We first tried G2 for middle school volleyball which was a slow-paced, instructional, noncompetitive evening rec. league activity. We tried it mostly as a compromise because middle school is the era of 'all my friends are...,' and all her friends brought Gatorade to volleyball. As it turned out, it also helped her end up with better blood sugars than on the nights she didn't take it to practice.
There are eight grams of carbohydrate in twelve ounces of G2. About that amount, poured over an abundance of ice and sometimes diluted with water to fill a large container, sipped slowly over the course of a 3 hour marching band practice, is just about right. Infusing just a few carbs per hour to burn off immediately seems, for her, to keep the lows at bay.
We've tried, as an alternative to this plan (generally when I've neglected to stock up at the grocery store), bolusing less insulin for pre-practice dinner, which just leads to an immediate spike. We've set temp basals, which lead to overnight highs. The Gatorade is what works for her.
Two years in, there have been 2 occasions when she's had to sit on the sidelines for a few minutes for a significant low to come up. That's with hundreds of hours of practice and performance.
It's obviously not just the Gatorade. A solid, healthy meal before practice, assessing the Dexcom or glucometer at breaks and reacting accordingly, and having a well-stocked bag of diabetes tricks including healthy snacks and fast-acting carbs are among countless factors crucial to staying in range enough to participate and enjoy the activity. But on occasions when I've neglected to replenish the Gatorade supply things have not worked out as well.