Where Are We Now

When it was through multiple daily injections instead of a pump that we delivered insulin to Lia, minus the early emotional strain, it was a fairly straightforward method of managing her diabetes. Or as straightforward as any such nearly impossible task can be. Three times a day she ate a meal, normally of food prepared in our kitchen, and for which we bolused insulin beforehand based on her blood sugar and the food’s carbohydrate count. Before bed we gave her a long-acting shot of Lantus to cover all of her non-food requirements for the next twenty-four hour period. In between these occasions we monitored blood sugar, treated lows, used exercise to bring down high numbers, snacked responsibly, and did all we could to go about our daily lives and not be slave to the next shot. In addition, we kept copious notes in her logbook of what she ate, how much we dosed, and how she reacted to certain foods; and we read and talked often of ways to better ensure her happy, healthy future.

As a result we were rewarded with the majority of her blood glucose readings in target range and a three month HbA1c two full points lower than when she was diagnosed. But besides being hurtful to Lia, the shots were time consuming, inflexible, and less precise than we wanted to be. The strongest thing they had going for them was that in theory a shot has minimal lasting impact in the course of a day. You deal with it and move on. Lia could dose and as long as that dose was marginally accurate she could within reason forget about diabetes. The key word, of course, is marginal, which when held up against the sexy appeal of technology doesn’t stand a chance. Add to it the reality of what it means to deal with diabetes and move on and we naturally leaned toward the pump.

So it has been three weeks since Lia switched over to the Animas Ping and while there have been some great improvements to her treatment, chiefly the absence of needles, the verdict — for us anyway — is still out on the MDI vs. Pumping debate. On the one hand, it is much easier to dose. Just enter a few numbers, press Go and voila, insulin delivered. The remote meter makes it even less intrusive, enabling us to not even bother Lia except for the blood test. The logbook reflects blood sugar results similar to what we were getting on shots, perhaps a bit higher as we are still trying to learn the pump’s capabilities and fine tune the many settings; and while we haven’t yet had a glycated hemoglobin test while on the pump, all indications are that it will be acceptable.

So why not stop there, with acceptable? Why muddle things up with second-guessing the reasons for abandoning what had so far proven to be an effective means of treating diabetes? Lia prefers the pump. It works well. Her numbers appear fine. Everyone is happy to be rid of the shots. Why can’t I be content with that?

Part of the reason why is the complexity of it all. Our expectations were high on the pump, either because of our lack of understanding or it being oversold to a couple of amateurs. The pump is no silver bullet. It is an intricate piece of equipment that requires extensive thought and expertise to use it to the fullest of its capabilities and achieve tighter blood glucose control. Tighter control, however, it appears at the moment, is synonymous with greater worry, and possibly even risk.

I’m not opposed to worry or work, especially if it will benefit Lia, but we are still newcomers to diabetes and there is much I’d still like to learn about it, and time I’d like to devote to research and advocacy. I wonder if the energy to calibrate the pump to Lia’s insulin requirements would be wiser spent, at least in this early diagnosis stage, better understanding the effect food and exercise has on Lia’s blood sugars. It feels at the moment like taking off in a plane without having thoroughly learned how to land it.

Complexity is one thing. It can be overcome through knowledge and experience, two things of which are both in short supply around here. But the other reason I am not quite sold on pumping over the shots has less to do with technology and Lia’s treatment than it does her way of life. It comes back to that minimal impact thing. MDI, as sad as it may sound, fit our lifestyle nicely. We eat real food, enjoy both vice and virtue in moderation, and take seriously the health of our mind, body and spirit. The shots, since she had to take them, became simply another part of the way we live our lives. Not a preferred part, mind you, but a part nonetheless. They were a few seconds of discomfort. We tried not to dwell on them, only the results.

But any loss of the privilege to live life unattended is the same no matter the treatment. Whether it is a shot taken before a meal or the programming of a highly specialized device, ultimately it will be Lia’s overall health that will direct us. I just hope that as these and more and more options open up to her they don’t come at some greater cost.

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9 thoughts on “Where Are We Now

  1. Hi again Steve — I know this is an old post, but I’d missed you all heading for the pump and getting started… My two cents are pretty much what everyone else says — but I agree with you that from a parent’s point of view there is a great deal of stuff to be getting on with. It’s more complicated, and more is *possible*, which makes the urge to tweak and tweak and tweak endless…. Saying this, we are getting better at knowing when to stop, over one year on…

    Also, and this is most important (as you say too): my son is happier on the pump. His quality of life is hugely improved. WE work a bit harder, but his life is better, as is his HbA1c (6.8% at last clinic). His liberation — having milkshakes with friends, dosing for popcorn, participating in life and denying himself little, has helped him feel so much more integrated in his teenage life. Adolescence is hard enough and isolating enough. Let’s remove the layers where we can, indeed. He takes responsibility at every turn and doesn’t have issues around food, eats healthily and doesn’t sneak food etc… Long may it last. The fine-tuning of the pump means that nothing is a lost cause. We under-estimate then catch up later etc… What a relief.

    Getting on with CGM is our next step too. This is proving harder.

    Well done on getting on — and I notice the new A1c is great for you all. Excellent!

  2. First, I really enjoy your blog. I appreciate your honesty and find your concern about your child very comforting. Second, I have had T1D for 19 years. I switched from 2 shots a day and a strict meal plan to MDI when I was 14. Despite the change in routine, I felt completely liberated from this diet I had been on for 8 years and was ecstatic to be able to eat my first piece of candy without guilt or negative impact. Then when I was 17, I made the transition to the pump, and again it was a change in routine, but I was liberated from the needles. Recently I started on my CGMS and, although it doesn’t take away finger pokes, it makes my life easier and closer to “normal” despite the extra gadget attached to my skin. What I’m trying to say is that the transition is always going to be tough but the benefit of all of this technology to our health and psyche can be huge. Soon you will wonder how you ever lived without the pump. Until then, keep doing what you’re doing.

  3. Thank you all for your comments and well-wishes. I am amazed everyday in what I read at how much we share beyond diabetes. If it weren’t 8:12 in the morning, I’d toast us all with a glass of red wine (homemade, of course 😉 Salute!

  4. I always appreciate reading your blog. I find so much of what you write resonates with our life. Thank you!

    My 7-year-old daughter Virginia was dx 2 years ago, and like you we place high value on whole foods, healthy lifestyle and thoughtful family life. When we were on MDI, we found a rhythm that worked well. We had keen awareness to time and the course of insulin. The rhythm of her care helped shape our days with some reliability when we needed that most.
    After six months, we switched to the pump (MiniMed) and quickly the rhythm fell away, replaced with the freedom to eat more often with little effort, tweek her BG more precisely, and put away the sharp syringes. (I cringe remembering the laundry bottles of used needles!)
    Our pumpstart had ups and downs–two pumps malfunctioned and we resorted back to shots. Nothing major happened, each time she was just fine. Now for more than a year, it has all gone smoothly. She is used to the pump as though it’s just another part of her now.
    For us, at this point it’s hard to imagine not having the advantages of the pump. Her A1C was terrific at her last appt. The ability to correct in small increments while knowing the insulin still active is invaluable. We are beginning a CGM (DexCom) too. An alarm will beep with lows which will help give peace of mind, esp in the night. Fewer lows and arrows with her BG readings will hopefully free her from lows and highs that feel so bad.

    I often think about how suddenly diabetes brought a loss of innocence for our whole family. Remembering the simplicity of when Virginia’s body was free and untethered like her sisters’ feels profoundly sad when I let myself think about it. It is ironic that we’ve become dependent on technology out of our hope to gain back simple freedoms. As a family who eats whole food, rarely takes medicine, and doesn’t wear company logos on our clothing, this still feels like a strange new world. I try to stay in gratitude with the surreality of the devices. Most of all, whatever our method of care, when our children are able to feel silly and joyful and free, it all makes sense.

  5. I hear what you are saying Steve. My Grace was on shots for 16 months before Grace would even let us talk about a pump. I let it be her decision when she was ready, as it was her body. She was, finally, this April, ready to switch to a pump. We chose the OmniPod. I am also glad that we had 16 months of MDI under our belt before we started the pump journey. It made us look at how exercise, foods and well, life, affected her body and her diabetes. Looking back, I am glad we didn’t push her to the pump sooner. It gave us a good background upon which to build. She will always, always, need to know how to give herself a shot, regardless if she pumps for a lifetime. It’s the nature of I dare say, the beast.

    I think that once you get to the point where you are more comfortable pumping, then the pumping begins to fit your lifestyle. It becomes second nature. You learn the advanced features and you get better numbers, enabling your kid to have more energy and strength. I think it’s a building process, having a pump. It might be slow building at first, then suddenly the pace picks up and before you know it, you have a really solid house. Here’s to you and your family and Lia doing some good building over the next 6-12 months and coming out with an even stronger place than what you started with.

  6. We made the switch in February after 6 months of MDI. I felt it was just like starting over, which is why we wanted to switch. I figured we had just gotten the hang of the MDI, and before we got to comfortable with it, we might as well learn the next step. It did take a few weeks, but it got easier, and made him much happier. We still have a reference sheet that we use in case a failure, and oddly enough today was the first time we had to use it. The cannula was bent and he wasn’t getting the correct dosage. One shot brought him right down to normal and reminded him that 1 – shots didn’t really hurt, and 2 – he really likes the freedom of the pump.

  7. Steve: Thank you for sharing this valuable insight about the switch from MDI to pumping. I come at it from two fronts: one, I have a personal belief that all kids or newly-diagnosed Type 1s should be on injections for a minimum period of time – arbitrarily, let’s just say two years. This to me would allow a person to learn those ins and outs you speak of, effects of foods, exercise, life happenings, etc. Not only that, but to also know what happens if the tech breaks – as it’s always a possibility. For me, I did two or three injections for 17 years (not MDI, as there was no carb counting) before going on a pump. The flexibility and desire to do away with injections were the reasons. I’ve definitely found that in my nine years of pumping, and it’s reinforced in the past few months as I’ve taken a break and gone back on MDI. There is more thinking about pumping, but to me you just can’t replace the benefits of better overall control once you settle into the routine of it. Anyhow, that’s my cent and a half. Good luck on Lia’s new pumping journey! I’ll look forward to seeing updates.

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