Haven’t read all of the threads in the post so this may be covered, but it sounds to me like the basal is too high and being calibrated per morning blood sugars, which are likely driven up by the dawn phenomenon. If you match basal to that, it will be too high the rest of the time. I think short of a pump or other methods I would not recommend for a child, your best bet is to set your basal dose so it’s correct most of the time, and then if he’s spiking in the morning, manage that with short acting. If you adjust the dose appropriately, a nighttime dose may actually be preferable, since with dawn phenomenon, you generally do NOT want to be dosing Lantus in the morning, since then you have the least coverage when you need it most. Instead I would consider dosing Lantus as late as possible before bed, so the gap is at bedtime, and it kicks in stronger in the early morning.
Thanks for this feed back and food for thought. I so appreciate everyone’s willingness to share their experience; hope I can “pay it forward” one day myself
So many good specific thoughts on here that relate to your specific questions. It sounds like you’re doing an amazing job – at your point in the journey I’m pretty sure I was sitting on my bathroom floor crying. We’ve been pumping (omnipod) and on dexcom since shortly after diagosis at 11 to now almost 17, and I agree with avoce the pump will be almost certainly a positive change because it gives you a second tool to respond to or change cgm trends (lowering or stopping basal insulin) rather than just ingesting carbs. But having ridden this train through adolescence now, some big picture lessons are:
#1: Let yourself and your kid be imperfect in terms of the number on the CGM. Constant data has some drawbacks. While near perfect is possible for many adults, it just isn’t for most kids with their constantly variable activity, food intake and growth, and the effort to be perfect will just about kill you. There’s a balance between good control to preserve health and being a little laid back to preserve sanity, which everyone finds in their own time.
#2: Even if you do get to perfect, it probably won’t be worth what you paid to get there.
#3: The day after you adjust everything to achieve perfect and feel like Awesome Parent, your child will grow/start a sports season/stop a sports season/acquire a taste for microwave popcorn and whoop, back to the first square of the candy land board again. Eventually, you will find this darkly humorous. Not now.
#4: the goal is for your wonderful kid to grow up and not need you anymore…at least for diabetes. To be able to live unlimited and also keep themselves safe and healthy on their own. No matter what the educators tell you, the only way to get to that most important goal is for you and your child to experiment together and let them own decisions as they are ready, seeing you model that sometimes you try things and it was a good idea but it didn’t work and that’s ok. And sometimes you don’t know what the heck happened, also ok! Teaching them to trust their own judgement and knowledge of their disease starts with “beat the dexcom” and grows as they do. Good pediatric endos encourage this. Seeing my son start to make his own management decisions (even if they go sideways sometimes) has been the most rewarding and affirming part of this T1 parenting gig for sure – so proud of him. Best of luck to you!
at your point in the journey I’m pretty sure I was sitting on my bathroom floor crying.
Oh, I’ve spent my fair share of times doing just that. Still do. Still have a hard time, sometimes, just talking about it with friends without tears. I hope this subsides soon.
Let yourself and your kid be imperfect in terms of the number on the CGM. Constant data has some drawbacks.
Yes, I have definitely learned that. In some ways, ignorance was bliss when it came to just the glucometer and no CGM. Found that my stress level INCREASED with the CGM at first (oh the peaks and valleys, and those dang double arrows). I’m learning to readjust to all the data, and learning when not to panic at a CGM reading and take a regular glucometer test instead. Don’t get me wrong, I LOVE the CGM and don’t want to be without it, but I’m trying to not let it control us. I was starting to get fearful of certain foods bc of how he’d respond. And that’s getting us nowhere fast. So, in taking your advice, trying to not hold back and take each food/meal/etc as a learning tool.
I remember in the hospital the nutritionist and CDE said we need to limit treats to once a week, like a special weekend after dinner brownie or something of that nature. I was crushed. And soul crushing to a 7 year old. We’re a healthy active family, but we like our treats! I think they just don’t want to, or have the time to, help trouble shoot every individual.
your child will grow/start a sports season/stop a sports season/acquire a taste for microwave popcorn and whoop, back to the first square of the candy land board again
Yes, yes. We’ve had our good weeks where he’s just in great control, then boom, seemingly out of no where, even with the same kinds of foods, he’s all over the place. I’m trying to stress less and go with the flow more. And what is up with popcorn!!?? We have a small at-home “movie theatre” type popcorn machine that pops pre packaged pop corn. Carb count and all and yet he still ends up high. . . for a while.
Eventually, you will find this darkly humorous.
This made me laugh. I think i can see that being true . . . someday.
Teaching them to trust their own judgement and knowledge of their disease starts with “beat the dexcom” and grows as they do.
This has been a great game and he really enjoys it. Trying to really emphasize him recognizing how he feels at a given BS number. He’s been showing some interest in carbs in foods, and I “talk out loud” as Im making my calculations and decisions. I don’t necessarily explain it to him (unless he asks) but sometimes hearing things over and over helps them to evenually sink in and “click”.
the goal is for your wonderful kid to grow up and not need you anymore…at least for diabetes.
There’s a famous saying that is along the lines of a mother’s job is not to be a shoulder to lean on, but to make leaning on unnecessary. Diabetes or not, its definitely one of the hardest and most bitter sweet jobs there is. Diabetes is an added layer (just for the spice of life i guess?) And it sounds like you did a great job at it.
I cried every night for a year…possibly longer (I’m a big softie). Everytime my son screamed bloody murder during a shot or a POD/CGM change-out, it ripped my heart out. I tried not to cry in front of him, but must confess there were times I just couldn’t hold it in. He’s finally in the stage where shots don’t bother him and that’s made my tears dry up for the most part. As a parent, we just want to “take the pain from them” and because we can’t, all we find ourselves being able to do is cry and curse…that’s what I did anyway.
I don’t know if this helps, but try to think about the CGM the same way you think about the speedometer in the car. I don’t know anyone who gets upset if the speedometer reading doesn’t match the speed they intended to go. They just change the pressure on the pedal. Regard the CGM the same way, just to enable you to see whether to add carbs or insulin to adjust the BG in the direction you want. The CGM isn’t a test, and don’t let anyone judge you by it. It’s just an instrument that enables you to measure and observe a property of the blood.
@diabeatit2020, I’m late to the party but I wanted to say, “Welcome!” I am so glad that you are here! You are an awesome mama!!
I mentioned this over on @Dusty_19’s thread, but I wasn’t diagnosed until adulthood so I won’t pretend to understand the parental agony at this stage. And I don’t think “agony” is being too dramatic. It’s got to be hard parenting and caretaking and learning what that caretaking is “supposed” to look like with so much differing information out there!
You are awesome! You are doing great! Your son is the luckiest kiddo in the world to have you advocating for him! And FUD is a fantastic place filled with fantastic fellow advocates!
The one thing I will throw out there is that it seems like you are already eclipsing your CDE’s in knowledge and practical application. That’s a good thing! One thing I wish I had known earlier was to be careful trusting the “should” statements, even from “experts” who have good intentions. I derailed my A1C for about three years following iron-clad “should” advice from a male diabetic expert who had great intentions, but he overlooked the female hormone component in my blood sugar management. I had to figure that part out for myself and realize that what I had been doing had been working all along and I should not have strayed from it. And definitely not for three flipping years while I got my confidence back in taking care of myself in the way that I knew was best!
All of that is to say that you already sound like you are doing a good job asking the critical questions for your son’s care that the experts may not be giving you good answers for. Trust that instinct. It’s a really, really good thing. That’s what will make your son’s individual journey get easier and more normalized. Following bad “should” advice when your gut (and BG numbers) is telling you this is not right often leads to T1D taking up more real estate in your life than you want it to. If something doesn’t work, it doesn’t work and it doesn’t matter what the “should” says about it.
And this is a fantastic community to help you sort through anything you want to sort through. Everyone on this thread (and site) has your back!
Hi T1Allison:
I can’t thank you enough for taking the time to post this to my message. It just really lifts my spirit- and that in and of itself can go a long way!! I’m sorry to hear of your struggles, but glad you hear you were able to trust yourself and get your treatment where you want it and where it works for you. It’s definitely intimidating at first to hear what the medical team says and then go “um, no, I don’t think so”. We are getting there. Some days are easier than others. I’m really eager to start pump therapy and get on that learning curve.
I think what tears me up the most is my son, for the most part, handles everything so well! I wish I were as strong as he is!! And right now I’m workin on making sure life as we know it returns to how we knew it . . . if that makes any sense. We left the hospital with so many rules and restrictions. As summer ramps up and kids are back out and playing, I don’t want to say no to the ice cream or popsicle or movie night popcorn, all things, to me, are resonable for an 8 year old to enjoy and look forward to with his friends.
Anyway, I’m rambling now. Again, thank you so much for your words or encouragment . You really have no idea how much it means to me!!
Do watch out for the signs of depression. My son did really really well for the first 5 months, then fell into a terrible depression that was only lifted when he went to diabetes camp and realized he isn’t alone. This disease takes so much from our kids, yes they will be fine and deal with it well… but damn as a parent sometimes it is really hard.
There is NO reason you need to restrict any of this. Some parents do to simplify their diabetes management in their kids, but having diabetes doesn’t mean you can’t have these things…all it means if you have to learn how to bolus for those things. We took the hard road and figured out (and still do figure out constantly) how to let Liam enjoy everything that all other kids enjoy. We don’t want him to feel any different than any other kid except that his insulin comes from a pump (or an MDI shot in those who don’t pump). 100% the same as all other kids except for that 1 respect.
And as someone here said to me once that really struck a cord…think of it this way.
“My child won’t remember every low or high that they get…but they will be more likely to remember those good times that they had to miss out on.” Depriving them of those yummy things will (in my view) create unhealthy relationships with food. So we learn to bolus them for all the delicious foods that we all enjoy…and guess what? If we screw up and the go to 400, so what! We learn what we did wrong and we fix it next time! If we over bolus for something and they go low, so what! That’s a perfect opportunity to LEARN (and to give them cake or ice cream to bring them back up again…never waste a perectly good low.)
The most important thing we do in managing Liam’s diabetes is to make sure he’s “in and out” of the highs and lows…we want to limit the amount of time that he spends in either of those areas. That’s our constant goal is to keep a good Time in Range (TIR) and get in and out quickly from both highs and lows.
That’s one of the great things about FUD. There’s no such thing as rambling here! We all go through cycles when we’re sharing more because we really need help…or we’re sharing more because we’re in a really good spot and can help others…or we go silent for a bit because other life stuff has cropped up for the moment and we’re just not checking in as much…but then we come back and FUD is still here! It really is the best thing.
One other outside perspective I want to offer that might help…there are so many opinions on what the GOAL is. What is the goal for bg before meals, the goal for bg after meals, the goal for A1C, the goal for “diabetes & life balance”, the goal for how to use Dexcom data (i.e. are you using it as your sugar surfing aid or are you using it for low alerts overnight)…etc, etc.
EVENTUALLY, not now, but EVENTUALLY you will figure out what your goals are for your son and how you define those.
I can tell you that my numerical bg goals would be considered awesome by some diabetics and terrible by others. I have a different set of variables to work around than other diabetics. We all do. And we all define our goals differently and that is okay. Some people are driven by bg control and then fit in their life after that. Others are driven by life choices and then fit diabetes in after that. And sometimes your own approach will change for different phases of life. And that’s totally okay.
A year ago I was dead set on shaving another 0.5%-1% off of my A1C. My A1C now is fine, but I wanted it “better”. Especially seeing what some people on here regularly “accomplish”.
But then I realized that my quality of life was going to hell and I wasn’t being the kind of mom or wife or friend or me that I wanted to be. And I also got honest with myself that there are some limits with what I can accomplish blood sugar-wise given the state of the tools I’m using and my personal variables. And that’s okay! That honesty with myself has led to way better living (and perfectly fine and safe bg control) than stressing myself out shooting for someone else’s goal.
So I think that’s the hard part (or one of the hard parts) of joining the diabetes club. There are SO many concrete numbers that we are swimming in daily (bg, ratios, pre bolus times, carbs, etc)…and yet the overall numerical goals are not necessarily hard and fast. So what in the hell ARE we shooting for? Does never going over 180 or 200 or 250 or 300 really matter? I mean sure, we don’t want highs. But they are going to happen. But my tolerance for which high number I’m okay bumping into on a regular basis can be different from someone else’s and that’s fine. And I think getting enough experience and confidence to find where your son’s “diabetes & life balance” exists is when it starts to get easier. But it takes time. Once you get there, it’s like giving yourself permission to worry about a shorter list of things. Right now, everything is on that list to worry about. Because there are so many dang rules. But the list really does get shorter as this journey becomes your own.
Eventually the goals you shoot for will be your/your son’s goals. Until now, you’re strapping on this set of rules that others are giving you. Big picture, that’s fine. We want to avoid dangerous lows and also the long-term complications from highs. But there’s A LOT of gray area in between there. And it’s okay to define your boundaries within that gray area and thrive from there on out.
Never feel like you’re on here too much. It’s not possible. That’s why we are so encouraging and so tightly knit as we are…we’ve all been there…we all bring our stuff here…because sometimes we can just understand our challenges better together here than we can anywhere else. 
That is so beautiful (all of what you just said)… Almost god dang poetic. And so true!
Folks here have said that nothing is forbidden, just bolus for it. For me that is true. However, the counter to “just eat anything and bolus for it” is that it will turn out some foods (especially in quantity) create just too much work to be worth it. I know I can eat Thai red curry, but I also know that if I do, I will be chasing high/climbing BG and will have to make repeated BG adjustments for about 7 hours. In theory I could learn how much to give as a pre-bolus and how far before eating, and how much to give as multiple square waves (or periodic injections for the “split-bolus” technique) but for me that turns out to be too much work to be worth it. — I can eat it, but if I do I know I’m going to be in for a ride.
Some people go to the opposite extreme, and severely restrict carb intake. The theory behind this is that tiny carb intake means tiny meal boluses, which means tiny dosing errors so no huge BG excursions from meals. Some people like to argue about what’s the best place to be on the spectrum from “eat anything” to severely-restricted carb intake. My view is to do whatever makes a good balance for you, so long as you are satisfied with the A1C you get. My view is that there’s no universal “right way” to manage BG.
@bkh , thanks for that caveat and I am the same way with Liam! I should even expressed that in my post to be perfectly clear. I have found that one particular food wreaks havoc on Liam’s BGs AND the food provides no real nutritional benefit for him. As a result of those two things, I don’t let him eat them. That food is the packaged “Ramen noodles”…they kill his BGs…like slaughter them, but they really do nothing for him, nutritionally. Because of this and, as you expressed, the work required to “figure it out”…we have a “no packaged ramen noodles” rule, for him. Now, we’d do a restaraunt ramen and test that, but as far as the packaged types, totally agree…some foods just aren’t worth the headache to “learn” how to bolus for them.
It’s why most diabetics I know don’t regularly eat anything that’s straight up sugar unless as a hypo treatment. No regular soda, juice, sugar-based candy (chocolate etc is much easier to work with bc of the fat), popsicles (again, if fatty/more like ice cream, easier), etc. Too hard to manage with insulin (even with Afrezza would be tricky). But of course all of those things make great low treatments! If I wanted to intentionally eat one, I’d basically make myself low and catch myself right as I was starting to drop.
We eat lots of cake and ice cream in this house. 
But we have 8 people who have birthdays and other celeberatory events so, yeah…we love our cake and ice cream here.
5 posts were split to a new topic: Discussion of the barely food known as instant ramen noodles
We eat lots of cake and ice cream in this house.
That’s good to know. Ethan’s bday is next week and I’ve been stressing how to handle it. For the last several years I bake all our cakes bc my husband and daughter were diagnosed with celiac disease about 5 years ago (who knew we had so manu autoimune genes in the fanily 
). Anyway, I think I decided to just make what I usually do, though I have yet to figure our the carbs as I don’t really want to know. My biggest concern isn’t so much the carbs, but any delay with the added fat from the frosting. Just going to have to take a deep breath and do the best we can and learn from it as we like our cake and ice cream too!!
If you need help with counting the carbs please feel free to ask away here! Everyone here has done that so much we can do it blindfolded. I don’t even “count carbs” for the most part anymore…I just estimate bolus and give a bolus, then adjust as I see BG trajectory…but that’s very hard for you to do w/o a CGM so I would try to measure and be precise in the carbs so that you can bolus as accurately as possible.
But I stress what I firmly believe to be true…at least for my son…he won’t remember a high BG…but he will definitely remember (possibly for the rest of his life), the fun he had at each of his birthday parties. Birthdays are stress-free zones! Mama’s and papa’s do the stressing behind the scenes! 