Our son was diagnosed with T1 when he was just over 2 years of age, on March 27th of this year. About two months later, we were finally able to work with our Medical provider and Insurance to get our son placed on a CGM (Dexcom G5 Platinum). Before we put him on the CGM we had constant issues with the lows…and neither my wife nor I ever got a decent nights sleep due to waking up every 30 minutes to check his sugars. The CGM has eased our troubles tremendously by now just needing to wake up, look at the receiver, breath a sign of relief and go back to sleep if his sugars are decent…without the need of the constant finger pricks, that he still gets plenty of during the day anyway for insulin injections.
So, my question to the group is…when is the right time to put him on the pump? What are the benefits? My wife and I are used to the routine now for giving him injections (we use the pre-filled pens for Lantus and Humalog).
I want to save him as much pain as possible…the weekly change of the CGM transmitter is already a miserable time for him, so if it’s another painful change out, then we’d really have to have a good reason to switch to the pump. Can a parent explain to me the benefits of switching to the pump? I have read that it’s possible to give smaller injections (to the .025 level, as opposed to the .5 for Humalog and 1.0 for Lantus), and that’s definitely a benefit because our 2 year old doesn’t always need this large of a level…and these injections have been the cause of some of his lows in the past, too.
Anyway, sorry for the long post…new site user, just registered, and looking for ways to make our sons life easier.
Harold and Erin
A pump is more flexible than shots, but it doesn’t mean you’ll never give shots again. So, I would make sure you’re very comfortable with what you’re doing and why when it comes to counting carbs, giving correction doses and giving boluses. When I went on the pump, I’d spent quite a while doing shots and I was very good at carb counting.
And it still was a big adjustment to go on the pump. The pump is NOT less work, but it gives you greater flexibility. The pump WITH a CGM will really give you a greater understanding of what is going on and how to deal with it. It really comes down to how confident you feel in your ability to adapt and how that will effect and affect you and your son.
Many of us Dexcom users (most??) wear the same sensor for two weeks (or longer) if the CGM continues to track accurately. I just started week 3 with my current sensor–so far, so good.
Thanks everyone for your responses.
How do you wear the same sensor for two weeks or longer??? Ours “shuts off” after the 7 days, and we are forced to change it out because it stops sending over readings to the receiver. Our son hates it because that needle must hurt going into his little abdomen.
It’s easy. When your Dexcom receiver notifies you that the sensor session is over, it automatically “stops sensor.” Then all you need to do is select “start sensor,” wait for the two-hour warm-up period to elapse, and then give it the required two fingerstick calibration numbers. Then you’re good for another seven days.
If your data stream remains strong and dependable, you may even repeat this process to get a third week out of the sensor. I usually get 10-14 days from most sensors. Once in a while I reach the third week but I’m very impatient with wiggly and inaccurate data.
For Dexcom, once the session stops, press the sensor warm-up icon as if you had inserted a new sensor and then recalibrate at the end of the warm-up. I found inserting the sensor very quickly means it’s least likely to hurt.
Wow…I never thought about even trying to do that! That is so AWESOME! You all have just cut my 2 year old’s pain in HALF and I am so thankful! I’m going to start doing that and, as long as the readings are accurate, as you all pointed out, it will save him that weekly hell session.
So glad to be here and I sincerely appreciate your assistance.
Really the bigger challenge is keeping it stuck on for more than a single week - if you aren’t already using Skin-Tac I’d invest in some, and something like GrifGrips would be worth looking into as well, not only do they help the sensors stay stuck on securely MUCH longer, but they come in lots of cute shapes and colors
Most of my sensors keep reading fine, but they get replaced around week 3 or 4 because it gets too hard to keep them on
I can cut his pain off completely for you, it just takes an hour of pre-planning. ask your doctor to prescribe EMLA cream. This is a topical lidocaine/prilocaine cream that you put on the site you’ll be inserting/injecting. cover with an occlusive adhesive barrier, such as tegaderm, wait an hour, then scrape it off and clean the area. he will not feel a thing. I use this stuff all the time myself.
My process is as follows: Remove the old transmitter, film, etc., While I’m “setting up” (getting everything that I will need, out, open and ready to go), my wife gives him a shower (which he doesn’t like either). After the shower is done, I perform the following steps:
- Clean the site with alcohol wipes thoroughly,
- Apply “I.V. Prep” (It’s an antiseptic wipe, but also has “sticky solution” built into it to make film more adhesive to the skin) to the entire area that needs to stay sticky,
- Install the transmitter,
- Apply the Tegaderm Film. (Because the film is large, part of my set-up, is to use a scalpel to cut out a hole large enough for the transmitter to stick through. Someone should create Tegaderm Film for Diabetics that have this “hole” built into it already.)
This process results in such strong adhesiveness that, at the end of the week I have trouble peeling the film from his skin it’s still so sticky. As a result, I’ve just ordered some “Uni-solve Adhesive remover” which I’ve researched helps remove the film without the pain that it still being stuck to his skin results in.
Thanks for the tip on the ELMA cream, MarieB! I’ll definitely bring that up to my wife, and our Doctor!
God bless you. I can imagine having to manage this for your son is terrifying. Fortunately, you’ve come to a good place for advice to make this all a little more manageable. Echoing what others have said, yes, you can get two weeks out of your Dexcom just by simply restarting it. Many have found that accuracy improves in the second week - including myself. Another trick to consider is placing on the back of of your son’s upper arm. I find that it stays on longer that way, but I also reinforce it with Skin-Tak ( https://www.amazon.com/Skin-tac-adh-oz-Skin-Tac-H/dp/B001LZUWP6/ref=sr_1_2_a_it?ie=UTF8&qid=1469807304&sr=8-2&keywords=skin+tak ) and I never have to worry about it peeling off.
Regarding the benefits of a pump: You’re right, it allows for micro-dosing in increments that would probably be very helpful for such a small person. But knowing how active my kids were at that age, I would probably only consider a tubeless pump like the OminiPod. However, there are also pens that deliver in 1/2 unit increments (Novopen Junior, Novopen Echo) which you might already be aware of. I personally find no clear benefit in control of pump vs. injections and find it to be a bit like a Coke vs. Pepsi debate. Ultimately, do what works best for you. I switch between both depending on the circumstances. I prefer the pump when I travel on business because of the convenience and discretion it offers, but I switch back to injections when at home. I just don’t enjoy having too many gadgets stuck to me for too long. And your son, still being so young, might find a pump in addition to a cgm intrusive and overwhelming.
All the best and feel free to continue to reach out to this wonderful community with any other questions you have.
The other thing to consider is sensor location. Side of the abdomen is the officially sanctioned location but many of us use other spots that are equally accurate–sometimes more so–and preferable for other reasons, such as being less painful on insertion, leave more “real estate” for injection or pump infusion sets etc. Back of the upper arm is a popular alternative.
And I echo the idea that the real limit on sensor life is how long you can keep the darn thing stuck on. SkinTac and Tegaderm for me. The big trick I learned here was that you can wait until the original patch starts to peel up before putting the Tegaderm (or whatever you use) over it. That way you get an extra week or so before the Tegaderm starts to peel up. My record so far is18 days before all my attempts came (literally) unglued, but some of the truly dedicated T1s around here claim they’ve kept theirs going into the 20s. I have yet to have the sensor wear out before the tape did.
Thanks! I will try all these recommendations. The bad news is that my 2 year has T1 diabetes…the good news is that my 2 year old has T1 so by the time he’s old enough to grasp the gravity of this disease, he’ll already be a veteran at learning how to cope with the pain involved. My wife and I were devastated when we learned the news, BUT, we had another son who had Cancer (Neuroblastoma) when he was 1 year old…and the hardest part of that was the NOT KNOWING part…once we knew, we were able to deal with it and move on. This disease is treatable, and people who have it, live a long and prosperous life so, as much as we hate it for him, and wish we could take it from him, we appreciate that he’s still with us…something that many families aren’t so fortunate to have. Just like our son who had Cancer (he’s been in remission since age 2, and he’s going on 14 now), and just like our son with Autism…we will deal with it and it won’t win.
Thanks to this community. I’m sure I’ll be here (hopefully helping others as I learn these things better myself), for many years to come.
I highly recommend pumping for T1D toddlers. The temporary basal rates that are possible only with a pump are musts with random growth hormone surges.
Could you elaborate a bit on temporary basal rates? Being so new, a lot of these terms are still kind of foreign right now. Thanks!
Also…random hormone surges?
My son was 2 years old when diagnosed. We use Dex G5 and Omnipod. I have found the combination very helpful to his quality of life. The biggest benefit (especially with lows) is the ability to turn it off. You just can’t do that with Lantus. Over time you will see natural rises and falls without carbs. You can fine-tune the basal rate. Certain situations call for a temporary basal rate. Maybe you see a slow and steady fall in the night. I would reduce basal rates temporarily. If that keeps happening, you can program that to occur automatically. Sometimes when he gets excited, his BG will rise. In this case we can increase the temporary basal rate–and because it is not predictable this will be manually done (not automatically). Hope this helps. FYI this was a lifesaver when we were doing MDI’s…
Wow! I am so grateful for all the wonderful responses. Until you just made this post I had never even heard of “Shotblocker”. We are definitely getting this! I looked up WHY this works and it makes sense that the distraction of having his applied to the skin fools the brain and helps mitigate (or eliminate) the pain from the shot itself.
Can’t express how thankful I am to the community.
Some of the most difficult to manage BG levels occur in childhood, specifically during toddlerhood and puberty. Toddlers spend a great deal of their time growing, which is mediated by somatotropins, a.k.a. growth hormones. Puberty involves both somatotropins and gonadal (a.k.a. sex) hormones. These two relatively broad classes of hormones wreak havoc with BG levels, causing “sticky” highs that seemingly come out of nowhere. And right when you think you’ve mapped a pattern and have a strategic insulin counter attack planned, they go away. And come back, and go away, etc. Gonadal hormones are more extreme, and hence a tougher challenge, with girls so be thankful you have a little boy. But don’t get me wrong, growth and puberty hormones remain a major challenge for boys, too.
Forgive me if what I’m about to say is stuff you already know; I’m not meaning to insult your intelligence. You are currently using a MDI (multiple daily injection) regimen for your son. MDI utilizes a once- or twice-daily injected long-acting or basal insulin combined with multiple injections of a rapid-acting insulin for corrections and to (pre-) bolus for carbs consumed. With a once- or twice-daily injection of basal insulin, what you inject is what you get. In other words, you cannot adjust the [mostly smooth], sustained action of your long-acting insulin to (much) more adequately cover the multiple periods of time during the day and night when more or less basal insulin is required. A pump uses rapid-acting insulin only to deliver constant, minute doses of basal insulin, kind of like a slow I.V. infusion. You can adjust the rate at which basal insulin is delivered and some pumps allow you to program up to 10 different basal rates per 24 hours. A pump also delivers correction doses to treat highs, and bolus doses to cover carbs consumed. Even when you’ve got the “perfect” basal profile established, BG remains quite variable due to all of the many factors that cause BG to vary, including but not limited to: stress, exercise, ambient temperature, excitement, travel, hormones, and planetary alignment. A pump allows you to set temporary basal rates to compensate for these innumerable variables. For example, my daughter is expecting her period in a few days. I know this not only from counting the days, but also from the fact that her usual basal rates are not doing the trick. She began having “sticky” highs (the kind of highs that respond very little or not at all to multiple corrections) yesterday afternoon. So I set a 35% temporary increased basal rate for the next few hours, which slowly but surely brought her BG back into range. I will continue reassessing and undoubtedly re-setting varying temporary basal rates for the next few days (or however long it takes). You’ll find that over time, you likely won’t be satisfied with the typical, extremely wide BG range of 70 to 180 recommended for kids after diagnosis. Many, if not most, people on this Forum correct when their BG goes higher than 120 (or even lower; we correct everything over 100), and are comfortable watching and waiting when their BG goes as low as about the mid-60’s before treating in order to avoid rebound highs. Some adults are able to maintain tight BG ranges with MDI, but the overwhelmingly vast majority of children just cannot attain and maintain this level of control without utilizing an insulin pump. I asked my daughter’s endo to prescribe an insulin pump the day after she was diagnosed (but had to fight to get her on a pump several months after diagnosis). This, along with getting a Dexcom CGM, were the best decisions I’ve ever made as evidenced by my daughter’s A1c’s which have consistently been in the low 5’s to mid-to-high 6’s.
Unlike using long-acting insulins like Lantus, a pump lets you set up different rates throughout the day to accommodate regular patterns in the way your body actually behaves. Which is great. But what’s really nice is that you can also introduce temporary changes. So for example if you’re going to the beach and you know your son is going to be running around like a nut for an hour or so, you can back off the amount of basal insulin being delivered so the exercise won’t drive him low. With Lantus you’re stuck with whatever he’s got on board for his daily dose.
One of the big challenges for kids with T1 is that they’re growing and changing, and a lot of that is triggered by hormone bursts which in turn can affect BG, insulin sensitivity etc.
Important to keep in mind that managing this disease is not ever perfectly predictable, and you shouldn’t go crazy when stuff happens that you couldn’t anticipate. Nothing to despair about, just the way it goes. I think it’s more difficult for parents to maintain that attitude than for the T1 him or herself, because you’re managing the disease for someone else. Being responsible for your own metabolism, it’s easier to say, “Oh whoops, guess I miss-calculated that one” whereas for a parent there’s the danger of falling into You just screwed up your own kid! what were you thinking!!! But the variations just go with the job, you do your best to tip things back to the middle when they go too far one way or the other, and there ISN’T some Penny Perfect, T1 Parent Who Always Gets It Right! out there, even though it may seem like it when you read all the pamphlets and instructions you get inundated with at the beginning.
Thank you! Your information is most appreciated…we’re still learning and we’re “babes” with T1 right now. The info you’re providing is helping us (me…the father) fill in the gaps some…my wife seems to have a handle on understanding all of this (she’s much smarter than I.)
My wife and I fought for a couple months to finally get our CGM, which is covered by Insurance, as is the Pump, but the pump apparently takes more justifications (probably because of the associated cost with it.) Our sons BG’s are constantly way up, then down…we’ve fortunately been able to keep the serious lows to a minimum, but the highs occur more frequently. My wife breastfed our son and had fully weened him before he was diagnosed with T1 but afterwards he’s gotten back to breastfeeding ONLY AT NIGHT and during the weekly change because it comforts him. This has led to highs during the night, though, because breast milk contains carbs. During the good nights he stays in the 200’s, but on the bad nights he goes above “High” and stays there for hours at a time sometimes. Fortunately, we check his ketones and they’re small usually. Now that he’s become adjusted to having this disease and all that’s involved in it, she’s trying to get him weened again. Again, he eats regular foods all the time, it’s just at night (because we were having lows we couldn’t avoid during the night, and the comfort), and when he is getting his weekly cgm chang-out.
We also have a 4 month old son (we have 5 boys total), so during the night…each one has their own breast and I don’t know how my wife gets any sleep.
We’re adjusting and dealing with this the best we can, but getting all the good tips on this site is definitely making our job (and his pain) easier.
Our doctor has prescribed (right now), 1 unit of Lantus every 24 hours (we give this in the morning), and .5 units of Humolog as a correction dose OVER 200. So from 2 - 300 it’s .5, from 3 - 400 it’s another .5, then we give him another .5 unit for his meal (the carb/insulin ratio is different for morning vs dinner but it’s 1/2 to 23 grams for morning vs 1/2 to 43 grams for dinner right now.)
We’re not at the point yet where we do our own thing…the doctor has us on a plan and we follow that plan. It’s scary to think that one day we’ll be on our own as far as dosing goes. But honestly, sometimes (especially during the nights), I wish I could give him at least 1/2 dose of Humolog because he rides so high…but we don’t because the shots only follow meals right now.