With diabetes you are going to find as you gain more experience a LOT to most of what we do is on our own. Diabetes is very much one of those diseases you have to self-manage. While that doesn’t mean never consult with your doctor, it does mean a lot of times, even the specialist don’t have all the answers. Diabetics learn from each other, and what works best. CGM’s don’t recommend leaving a site in for 13 days, but just about anyone with a CGM for any amount of time starts doing it…WHY…because its cost effective, less painful, and if it works and you are still getting good results why not. I’m sure Tslim, doesn’t recommend users withdrawing the remaining insulin from the cartridge and inserting it into a new cartridge when you do a cartridge fill…but that is 45 or 50 plus units, I’m not going to just toss out. No problems, works just fine.
I have a feeling you and your wife will reach a consensus and end up doing what’s best for your son. Sounds like you two have a great system in place for how to work things out when you don’t see eye to eye! 
Sadly, I have probably given a misleading impression of the situation on this side of the pond. What I meant to suggest was that a number of the top paediatric endos will put small babies and toddlers directly onto a pump. However this is by no means universal and for older children, the “start with injections” rules apply.
Health care is “devolved” in the UK, which means that the systems and rules are completely different in England and Scotland. The Scottish Government introduced a ruling in 2012 that all under 18’s should have the opportunity to use a pump (provided the parents meet the basic requirements of responsibility to ensure safe usage). Four years later, in the best areas pump usage is at >50% whereas in the worst it is still around 25% (largely due to bureaucratic foot-dragging and Jurassic-era medical staff). With the exception of one area, there is almost no funding of CGM usage for under 18’s - and funded adults are as rare as hens’ teeth. The CGM funding situation is a bit better in England. We are currently lobbying the Scottish Government to improve CGM-funding North of the border for both adults and children…
So, the Endo said their only concern for “location” (belly -vs- arm) is that of accuracy AND that it’s not an officially sanctioned site to wear it. As such, my wife (who also has been reading everyone’s helpful and amazing comments as well (we both read on this one account)) said she’s willing to move it to the arm and try it out because most of the “real diabetic world” wears it there, and there are definite benefits to wearing it there.
So on our next change…(btw, this makes our 11th day wearing the transmitter without changing it!!! w00t!), the CGM will be placed on his arm. Yay for victory!
Okay, so on to the next topic…the pump. Because I had heard such great things about the Omnipod, my wife told the Endo we’d like to begin the process of getting the pump. So, first off, we found out that we have to go through “Pump training”…which we’re totally cool with since we know nothing…other than what you all have taught us and what we’ve researched on our own…hands on with many different types of pumps will be beneficial.
However, the doctor didn’t recommend the Omnipod for us because she said it doesn’t deliver the small dosages that we need for our 2 year old son. I had sworn that it delivers in .025 units, but after researching, I see that the lowest is only .05.
So that brings me to my question…IF we aren’t going to do the Omnipod which seems to be out of the question since we really need small doses for him at this stage of his life…what do you all recommend? Does anyone have pros/cons for different units? Do you have a toddler who uses a specific one? If so, I’d really love to hear from those parents who are doing this right now…what would you (or what would you NOT) recommend, and why?
Also, I had mentioned that my wife went back to breastfeeding our son as a comfort thing for him, but she’s going to ween him again now that he’s had a few months to get acclimated to the the CGM and kind of get used to the drill of getting stuck all the time (if one can ever get used to that. 
). What we have been noticing is that his sugars go really high during the night for some reason…during the days’ it’s awesome…between 100 - 200 for most of the day. But in the evenings (around 10PM or so) all through the night his BG’s skyrocket…sometimes over 400 (and they stay that way for sometimes hours at a time!)…since we’re not allowed, at this point, to give “correction insulin” except with meals…we just have to spend our nights measuring ketones to make sure they’re slight/low, etc., So, my point is…over the past week, my wife has been staying up late…I’m talking 4 - 5 AM because she has a lot going on right now…and our 2 year old ends up being up with her…and we noticed that they’re STILL spiking! We had written off the spikes to his breastfeeding during the night…but we found out that it’s not that afterall (or…not totally that). Anyway, my wife brought this up with the Endo and she said that toddlers are very interesting in that the Lantis does not always work the 24 hours that it should…sometimes it wears off in 1/2 that time. As a result, (and the only change she recommended for us right now), she wants us to start giving him 1 additional unit of Lantis in the evening before bed.
His A1C’s WERE around 8% 3 months ago and this time he was at 9.5%…and it’s because of these nighttime spikes in BG. So we are going to make that one adjustment and see how his sugars respond…the nighttime highs are killing his A1C’s, and killing me as I set here worrying about DKA one day.
Looking forward to anyone’s input/advise/perspectives and especially info on the pumps.
Thanks!
BTW…since both my wife and I share one account, we’ll use an initial system so that you all know who’s typing. Anytime Harold (the husband) is posting, I’ll use a -H at the end of my post. Anytime Erin (the wife) is posting, she’ll use a -E at the end of her posts. 
Thanks again.
-H
I have a tSlim right now that i am really liking, but I first started out with Medtronic. They make a pretty user friendly pump and its pretty sturdy too. I personally didn’t like Omnipod when I demo’d it, but I just didn’t like the pods themselves, thought they were a little bulky. I think for a small child though, if it isn’t going to meet your needs just yet, I might hold off for a little longer until it does. A tubed pump might not be bad for an older child, but for a toddler, I think the tubing and easily being able to pull out infusion sites would make me hesitant on using a tubed pump on a toddler. Unfortunately that is going to be your only other option other than Omnipod, would be using one of the tubed pumps such as Medtronic, tSlim, Animas, etc. I would def see if you could do a trial run with one, pumping saline before you decided on it. See how well your child does with a tubed system, and go from there. Also take into consideration how durable a tubed pump is in water, and likelihood of a mishap occurring, because lets face it LOL toddlers are sneaky.
Bummed to hear that the dosing increments with the OmniPod system just won’t work for your little guy, because my daughter and I think OmniPod is the best pump in the universe. My daughter announced that she will not consider using an AP until OmniPod releases their AP, such is her aversion to tubing.
We may do pod when he gets bigger but right now the Endo is really recommending we get a unit that allows us to give finer dosages. If it weren’t for that, we’d be sold on the pod. Due to his size she strongly recommended having a unit that can administer the .025 units.
The Endo specifically recommended the Animas Vibe. Anyone have experience with it? Is it good/bad? Pros/cons?
Well, heck, based on everything I’ve read over on the CWD Forum, I was going to suggest you consider the Animas Ping (primarily because of its remote bolusing). Seems like a lot of parents of toddlers and youngish kids love their Pings.
Do yourself a favor and check out the following:
http://integrateddiabetes.com/insulin-pump-comparisons/
ETA: OOPS, looks like Animas stopped manufacturing the Ping? I’ll look into this a little further. Oops again; looks like I made an incorrect assumption based on the fact that I couldn’t locate Gary Scheiner’s (takes moment to bow head in deference at the mention of His name) comments on the Ping. The Ping appears to still be alive and well. (Someone correct me if I’m wrong.)
This may sound completely off the wall, but I found researching different pumps kind of fun. My daughter and I so very badly wanted her to pump (and we had to jump through so many stupid hoops for her then-endocrinologist) that we both practically felt like I had gotten her a pony the day her pump arrived.
And we both just smiled and nodded when the CDE instructed us to do a “saline start”; as soon as we got back to the car, she ripped off the saline-filled Pod, I filled a new Pod with the real thing, and we hooked her up. And never looked back. 
lol. I’m actually doing that now. I want to have some knowledge of the pumps on the market before our “Pump class”. Youtube is such a great source for “reviews”
Gary Scheiner is even better! (Please refer to link in post above.) But the more the merrier!
I’m seeing that a lot of these pumps pair with the Dexcom G4, but I’m not seeing anything about whether they pair with the G5 platinum. I hope I can find something that integrates CGM into the pump…to me, that would be awesome to have a single device to deliver insulin and tell me BG’s IOB’s, etc.,
IMO, the long and short of it RE your son’s spikes boils down to the fact that he needs more insulin. After my daughter was first diagnosed, her endo (not unlike many others I’ve heard about) was overly cautious about lows. Unfortunately what goes hand in hand with few to no lows is a lot of highs. Now I’m not recommending you do the same as I did, but after about 10 days, I simply could not tolerate the high BGs her team felt it was okay for her to have, so I took matters into my own hands and ever so slowly increased her doses until she was pretty much always under 180, then I went from there. Before puberty reared its ugly head, my daughter rarely saw numbers over 130. There’s no way I would have ever been able to sit on a BG over 250. Then again, my daughter was 11.5 years old when she was diagnosed, and I’ve never had to treat a toddler.
I just feel badly for you all that you son’s endo isn’t more concerned about BGs up in the 300s and 400s! Heck, my daughter’s BG was barely over 300 at diagnosis…
Not so important to me because, as it currently stands, new-and-improved versions of the Dexcom crop up a heck of a lot faster than pumps advance. So at the exact instant that I’m typing these words (because I know Tandem is coming out with an integrated pump/CGM that will allow you to upgrade the CGM component) having an integrated system means that you will, in relatively short order, be tied to an older version of Dexcom. No thank you!
My son was over 500 at diagnosis…and he was in the hospital for almost 2 weeks because they couldn’t get his sugars to do what they were supposed to do. It took them nearly 2 weeks just to work out the right dosages for us to be able to take him home. They have given us the following range:
Night time needs to be over 100. If he goes under 80, we have to give juice.
During the day they want his bg’s between 100 - 200 BEFORE MEALS. If it’s over 200, we have to give 1/2 bolus unit between 200 - 300, and another 1/2 bolus unit for between 300 - 400.
We’re told to check ketones if above 350.
If he is higher than between 100 - 200 before meals, that’s what they’re still doing with us…still figuring out what’s the right dosage for him, and increasing, or decreasing bolus shots as necessary. The basal (Lantis) has always stayed 1 unit, 1 time a day…we’re now doing 2 basal shots per day (1 when he wakes up, and one in the evening, before dinner.) It just feels like it’s taken a long time for them to figure this out. He was diagnosed in March…I could probably do exactly what you did and figure it out myself through small dose trial and errors, but I don’t want to screw up and kill my son so that’s why we’re just hoping we get the right dosaging figured out soon.
We’ve been told toddlers run, and ride, much higher bg’s and that we don’t have to worry about ketones until the 350 mark and to just give corrections for anything over > 200.
That’s where we are now.
Unfortunately, what they don’t tell you is that you don’t have to have ketone in order to be laying down minute amounts of vascular damage that can, over time, accumulate and cause complications. Not everyone necessarily agrees with this theory, but I’m a big believer…
Yeah, we were given the “treat anything under 80” song and dance, too. “Normals” routinely run BGs under 80. Again, not meaning for you to follow our lead, but after my daughter became Dexcomified, we’ve learned to be pretty comfortable watching and waiting until my daughter’s BG is under about 62 (unless, of course, the dreaded double-down arrows rear their ugly heads) before treating (with a few carbs at a time, not 15!) I hear your frustration; reading about your son’s 300s and 400s makes me gnash my teeth for him.
It is quite remarkable how your experience so closely resembles my own. I have gone through almost the exact same issues you have. My doctor also had reservations about the 0.05 minimum bolus–but we figured we would just try it out, and it has worked well for us. I do have a few questions.
- What is the correction factor and carb ratio?
- Why are you not allowed to give corrections?
did you see this?
1a) Correction factor: The correction factor is 1/2 unit for each 100, over 200. So 200 - 300 = 1/2 unit correction, 300 - 400 = 1/2 unit and 400 - 500 (heaven forbid) is another 1/2 unit.
1b) Carb ratio is 1 unit for 22.5 carbs
- We can give corrections with meals only - right now.
Also, my wife had to correct me about a few things (my memory sucks.) 1…he was diagnosed on February 29th of this year…she said I should remember it because the 29th doesn’t happen every year…leap year and all that. March 27th was when my youngest son was born. :: blushes :: (Did I mention I have 6 children so my mind is pretty much shot?) Also she said we weren’t in the hospital for 2 weeks like I had remembered…only 5 days. There, I feel better now.