My 3yo son was diagnosed in September of last year. Just started the pump – Medtronic Minimed 530 – and I’m incredibly confused about the management we’re getting. We were told that it was so much better, could provide better accuracy, etc. and yet my son’s BGs have been in the high 100s and 200s since we started – unheard of for him – and he’s getting nearly double the insulin he was with injections. Anyone else had this problem? Is it just some sort of adjustment period? Is there a slower absorption rate with pumps?? His infusion set is in the same spot as his injections were (on his bottom). His endocrinologist just keeps saying it takes time to get it right, but I don’t understand how my little boy can be getting way more insulin and higher numbers. Frankly, it’s a little difficult to get excited about minute increments and accuracy when the bloody thing takes three hours to get his numbers to the ideal range – as opposed to 1-2 with an injection. And, I’m frustrated that no one mentioned any of this, not his doctor, or the rep, or the host of others with whom we spoke to get him all set up. Any feedback or opinions are greatly appreciated.
of course I am not a doctor but my best guess would be that he is exiting the honeymoon period. our daughter only took 3 months to exit the honeymoon time but we thought that it would take closer to two years. of course every child will be different. this time for us also coincided with her starting on the mini med pump. we did so much trouble shooting with the pump and even went back to the injections for a time but in the end we realized that it was just the honeymoon period ending. And yes she does use 3 to 4 times more insulin than she did at the beginning of her diagnosis.
I would talk to the doc about honeymoon and do a little internet research. The honeymoon period has a pretty obvious meaning behind the name. T1 is much simpler to control and requires less insulin when the body still has some functioning insulin producing cells at the beginning. we also switched to the sure t infusion sites during all of the troubleshooting to be sure that the needle was straight in and not bent rubber. I do not know if this helped but we stuck with them. we are still gradually cranking up the levels every few weeks.
As you get used to the pump you will enjoy the ability to adjust basal and bolus amounts for different times of day. We set hers very conservatively at night and for example, after lunch she seems to need much less, probably because of running around. because she is with us all day I feel confident that we track her as closely as humanly possible and still she is high or low at least several times a day. The difference with the pump and sensor combo is being able to watch it rise and fall where without the cgm we wouldn’t have that data.
It sounded so ridiculous to us when we were told that our target for being in range is only 50%. I mean, I want 100% in range every day!!! Of course, then I remember that an organ has failed and no amount of my careful attention will ever measure up to a functional pancreas. But we do the best we can to hit that moving target.
My son is definitely still in the honeymoon period. We are actually initiating the pump and CGM in order to be prepared for when he no longer is – we’ve been warned that it’s usually within the first year and he’s approaching that mark. But, I don’t think this is an issue with that. This is an issue with the pump and having a comparable absorption rate as with injections – and the pump just isn’t cutting it at this point and I don’t understand what adjustments could possibly change that – obviously double the insulin isn’t doing anything. And although I know that insulin isn’t the enemy, I also don’t see the point in pumping my kid full of twice as much to get half of the BG control. I did much better with injections – we actually got his A1c from a 9.8 at Dx to a 6.5 in six months. And now I just feel like that’s all going to get flushed down the toilet. And while the endocrinologist may think his numbers are fine – they could be better, and it’s my little son, not hers, that’s paying the price.
We’re using the mio infusion set – it’s the first we’ve tried so maybe we’ll give the sure-t a shot – the idea of the needle staying in is a bit cringe-worthy, but if we get a better result, I suppose it’s worth it.
Hey jbyerly! Sounds like you’re pretty frustrated. I might have a few answers. I was diagnosed when I was 3 years old and am now 32 years old with no known complications and have been on a pump since I was 17 years old. So, first, the extra insulin, I’m assuming your son was on a long acting insulin along with a short acting insulin before, but when you have the pump instead of long acting insulin you have the basal rate which is the same type of insulin you use for the boluses (the insulin you give when he eats). The basal rate acts more like a pancreas would in that you get a tiny bit of insulin every hour, this is better for him when he wants to run around or wants to play sports when he gets older because it’s more easily adjustable and more immediately adjustable as compared to long term insulin. It makes it look like you’re getting more insulin total but it’s just a matter of the absorption rate of the actual insulin being used and only using one type vs 2 types. If he’s having problems on and off then there might be a problem with the infusion set, maybe he snagged it on something and it just ripped out a little bit and isn’t as far in as it normally is or maybe it’s up against a nerve or vein which will affect absorption (I’ve done this before and it doesn’t always hurt so there’s no telling except by the numbers). But doctors usually aren’t worried about starting blood sugars out higher and working the way down vs lower and trying to raise them, it’s safer in the short term since low blood sugars can be so immediately dangerous. And to be honest, blood sugars are going to fluctuate throughout his life, so try not to get too stressed about it. Hormones will effect bg, activity changes, stress, sleep, what he eats, when he eats, weather changes & changes in elevation (yes I know that sounds crazy but I’ve known people who swear cold weather makes their blood sugars better!!!). There’s a lot that is just out of our control. From my own experience the pump is more than just better control of my bg (although there’s that too) it also gives me more freedom to live a “normal” life and eat and do what I want when I want. This can be hard to take all in and deal with. But it means we’ll constantly have new things to learn.
starting pump therapy is a lot more work when you compare it to injections. It took me many months to get the proper basal rates, and when I switched I had 29 years experience treating diabetes and I was a “few years” past my honeymoon and so my insulin requirements were not changing…daily.
first follow-up question, when you say more insulin, do you mean when you are looking at a meal, is the bolus calculation on the pump the same as it would be for a shot? is it less? or is it more?
nothing can be figured out unless his basal rates are right. again, that’s what takes a long time to get right especially in kids that tend to have higher basal rates, and especially when he is now making less and less of his own insulin. (when I was honeymooning, I could almost ignore my diabetes and have decent control)
infusion sets and sites are critical. some people cannot tolerate plastic cannula type sets, some need the metal ones like sure “T”. for others, locations and proximity to muscle make huge differences in absorption rates. Scarring from infusions sets are more profound than injections, so it is also critical to rotate sites. Some people have large histamine reactions to the infusion site and for me, that means poor absorption for up to 6 hours after a set change.
please look into the book “pumping insulin”. it is the best resource for pump information. you can make any kind of therapy work with enough effort. Pumping takes a lot of effort. For me it’s been great these last 12 years or so, but it’s not ideal for everyone. good luck.
The amount he’s getting for each bolus is more – we changed the ideal range to 100-120 vs the 140 we were doing for injections. So he’s getting more insulin there. Ironically, his numbers were between 80 and 120 two hours following an injection despite the 140 target and haven’t been anywhere near that with the updated ideal and pump. He’s also getting a tiny bit more in his basal. He’s not on much insulin period, so these changes add up to nearly double what he was on with injections. I guess I don’t understand why his basal rates would change just because he’s on the pump? I realize that the insulin is different – he had .5 units levemir in the morning before and now has the basal set to deliver.6 units of the humalog over 24 hrs. Is the difference in insulin type possibly the culprit?
I’m definitely exceedingly frustrated – this all feels like a huge step backward in management, even if a temporary one. And I don’t like seeing my son high all the time – he’s just kind of crazy and spastic and I don’t imagine it’s the most comfortable state to be in. Though maybe he’s enjoying it immensely; mommy, not so much.
I’ll check out the book. Thanks all for the information and support.
He’s probably not enjoying it, I know when I get high I tend to feel sick (wanting to vomit and kinda fuzzy and angry and hungry but not wanting to eat, although I know people who want to eat a lot when they get high bg). It’s definitely frustrating to work so hard and have the bg not in range, but hang in, you’ll get there! And good for you for being so on it, he’ll definitely benefit from it later on!
This is what I would do. Of course, you should talk to your doctor and never do anything you are not comfortable with. I am not a doctor. I just have 30 something years experience.
if his blood sugar is 80-140mg/dl before a meal, then instead of his pump bolus, bolus for a specific meal with a shot instead. Leave the pump on and all, just bolus with a shot like the old days.
It would be really useful if you use his most common meal and not something new.
see what his blood sugar is at +2 and again +4 hours with the shot. at +2, blood sugar should be no greater than 50 mg/dl higher than his starting point, at +4 hours, within target.
If the shot brings his sugar down in the way you are used to----> his infusion system is causing the trouble
if the shot does NOT bring his sugar down the way you are used to ----> it’s honeymoon. trial and error time and probably a year’s worth of adjusting carb ratios and basal rates until his body stops making insulin completely and then things will only be “a little crazy” after that.
in my opinion, basal insulin requirements do not change with the pump, actually, total insulin for basal should go down a little if a person was aggressively treating diabetes and trying to keep their blood sugar below 140 before they started pumping. the things that cause basal rates to rise are absorption problems (specific to a pump), and than all the non-specific issues such as presence of stress or growth hormones, additional body mass, or if you are honeymooning - the absence of your own insulin. Colds, steroids, and some other OTC drugs, can also increase a persons insulin resistance and therefore cause your body’s insulin requirements to increase. cheers!
Thanks for the advice. His numbers seem to have leveled out in the last couple of days, so maybe just an adjustment to the pump, but I’ll give the injections for food a try if I continue to see issues. Best!