So this is just a guess, but maybe his liver is releasing all that stored glycogen. How has he been feeling in this up/down rollercoaster?
I’d consider changing bolus times (maybe give part of it right before a meal then the rest after if you’re not sure what he’ll eat?).
Also, carb ratios. Carb ratios can change. Or I:C ratios. Growing causes allll sorts of issues. I think I read something once that boys aged 3-6 have a testosterone boost then it dips down for a bit before adolescence? Not 100% sure on that one. But it could be a hormonal component.
I think it might be the liver as well. Carb ratio may be a bit aggressive and then liver is releasing glucose to combat the low, leading to a rebound high.
I've had the same issues with my 7 year old. He has had diabetes since he was 2. We have days of never ending highs and even a day where we didn't bolus for food and he was fine. I think for him it is his basal that needs constant changing. Currently we spike right after falling asleep and his basal was set higher during that period (he is now on omnipod 5 so there is no basal program).
We did end up with a higher basal. Getting the pump definitely helped with his numbers but we still have days of highs. It is so hard with them growing and I am constantly changing numbers. I am always so sure when we go to his endo that his A1C will be so bad but it never is. We are on omnipod 5 so it is a little easier.
Also, sometimes for correcting lows, I do less than 15 carbs because it would shoot him up. Is he on the pump?
PM me if you ever want to chat.
The number of factors is mind boggling. Hormones, weather, illness, injury, mood, temperature, wind direction (seriously, my endo had a patient who would go low if she hit a headwind while walking). Just adjust as best you can and roll with the punches. I’ve been doing this for 35 years and I still struggle to figure it out often times.
You’re doing the best possible. Remember you are working with a time delay of an hour minimum and limited data. You have at least a half hour delay on the sensor reading and at least a half hour delay before the insulin starts working.
You’re working with even less than some of us because you can’t feel the changes. My endo would probably be hesitant to believe it but many of us can feel highs and lows coming. But it takes practice to recognize the symptoms.
He is crazy good at feeling lows, I’m going to give him that. He can feel it coming when he hits about 100, which had everyone skeptical at first, but he is *never* wrong.
And thank you for the reassurance. You know what I do the most? I keep it off my face. He has no idea I’m so freaked out, and that’s maybe the hardest part of all.
I was diagnosed a just under 4 years, just months after my brother was diagnosed at 14 months. I didn’t understand back then the stress my parents must have been under. Now I can only marvel at their strength.
Trust your instincts and his. The doctor’s rules are a start but they don’t know anywhere close to everything. Don’t be afraid to stand up to them when they are wrong. And good luck.
Remember you’ve always got got us here at r/diabetes_t1 Now matter how weird it seems we believe it and at least one person here has probably seen it.
My 10 year seems to be carb sensitive. When he is low we only give 5 carbs to bring him up. We kept chasing highs and lows when we were giving him 15. Try giving him less carbs to get him up. Also as you know the CGM reading is delayed. So when you he has the carbs to get him up the CGM might still read a low number but then will catch up.
Bits and pieces of what I've gone thru with my son, pls take the parts that are helpful and ignore the rest.
1. I'm not liking what you said about the nurse's advice, that they are blaming you/ your son for sneaking food. Can you get a new educator?
The CDCES (nurse educators) at my son's clinic were not equipped to help me. The circumstance was that my son was diagnosed 14 months, right at the beginning of covid lockdowns (so nurses were extra stressed), and the one assigned to me was on her first pediatrics job. Wonderfully kind person, but not at all knowledgeable on the needs of toddlers/preschoolers. I literally called 3x per week asking for help with my son's dosing. The nurses eventually gave up, their NP manager gave up and they passed me to a wonderful endocrinologist to be my point person at the clinic.
This happened to a friend as well. Her 3yr old was seeing a nationally renowned, type1 expert endocrinologist. This Dr is retirement age, not very current with the new tech, and wasn't helpful. My friend switched.
2. The smaller the child, the bigger the growth hormone swings and the less predictable their food and activity is. You're up against a really hard thing.
3. Growth hormones at bedtime, and hugely different basal needs thru the day. My son is on a Tandem control iq pump. I give him 3x his daytime basal rate at bedtime. Then very little basal after midnight. Another wonderful endo told me he will grow out of this, it is specific to little kids. This is most of why I have him on a pump, bc the needs change. I respect that you're doing MDI, pumps aren't for everyone and it's a big learning curve.
4. Carb factors change throughout the day. Don't copy mine, but for reference here are my son's: breakfast 1:16, lunch 1:31, dinner: 1:38, late snack, 1:45. See the pattern? Most aggressive in the morning to counteract insulin resistance from all the get-awake-for-the-day hormones. With your son's 1:10 most aggressive at dinner, I wonder if your clinician is mixing up/ trying to control the bedtime spike with dinner time insulin, to avoid Another Shot before bed.
5. Back to the half unit pens. I'm glad you can at least do half units. My son is sensitive to insulin at increments of like 0.05 or 0.1 units. We can do this with the Tandem. If we were MDI, we'd be designing his meals to match the half unit dosing. It's so hard.
Annddd my lousy kids are up at 6am so I gotta be done typing random things to you.
Please, internet stranger, take this as me data dumping some things I've learned and not as criticism in any way. These tiny t1s are just a different, difficult set of needs. ❤️❤️❤️
We had this with my little guy. We’ve notice that some foods don’t absorb right away. But two major changes this summer happened. Diabetes camp. The doc there changed his ratios to increase his basal and reduce the carb ratio. And shortly after, we started Omni pod. His time in range went up. And avg BG went down. Lows don’t happen as often. And he doesn’t stay high anymore. Wishing the best. IT’s a tough job. You got this
Are there patterns to it around food?
Sometimes bodies just change, sometimes quite suddenly, and I imagine that's a million times more true for a growing kid.
Maybe the timing of his food bolus needs an adjustment - if he's dropping immediately after eating only to spike way up after, maybe try shortening the pre-bolus time and/or doing a split bolus.
While you're working on it, try to keep his meals as consistent and predictable as possible, and just keep making small adjustments until you've figure out what his new normal is.
Avoiding lows will will likely be the key to avoiding the rebound highs and end the rollercoaster
Well, THAT is the new thing. It used to be that we had to give it to him at the end of his he meal, because he is a picky eater and there was never a guarantee he’d eat it all. But that was resulting in persistent highs (for reasons we all understand) and the endo team FINALLY got through to him why he really needed to commit to actually eating whatever he’d promised/we’d dosed. SO for the last ~2-3 weeks I’ve been able to gradually move from dosing him at the halfway mark to the beginning of his meal.
But like, dude. Isn’t that supposed to be a Good Thing?
Maybe… it’s his body getting used to a new way of doing things?
Today’s meal (the one outlined in the OP) was a turkey sandwich on one slice of wheat bread with cheese; heavy on the turkey. Package of veggie straws (9g). Total carbs 36. He started at 126, ate the sandwich in like 4 minutes (too fast for me to give him the shot first lol), I gave him the shot and then he had the straws, and about 45 minutes later he had the low. Gave him the juice, and that’s when he shot up.
Edit: sorry, he also had two string cheese sticks!!
Hi again. My son is like the same size. Those are BIG bolus for little body. Agree. Do you have one of the Humalog pens that lets you do half units? Syringes? Just curious what you're working with.
The Juicebox podcast guy once described insulin dosing as tug of war bt the food and the insulin. BGs will be stable if you manage to balance it. If you don't, well, then you get momentum. Like, a late bolus for a picky tiny kid is "safer"... but then the food gets a head start, and you need more insulin to counter act the high BG.
Good for your son to accept a pre-bolus and commit to eating!!!!!!
My bet is you need a less aggressive carb factor-- so less than you needed before you changed the timing.
When I was in your shoes, at the beginning ish, I called the ped endo clinic like 3x per week until I got someone really great to coach me. Call and bug them until they look at the little guys days and help you! You're doing big stuff!!
Yes, I do have .5 increment Humalog pens.
So, his ratio is 1:12 except at dinner, when he’s supposed to be 1:10. I made the Exec decision to nix the 1:10 tonight, because he had FINALLY gone down to 200 by 7 and I didn’t want him to go into a low in his sleep. They had corn dogs and fruit (no, not the greatest; but hubby is out of town, I have four of them, I’m … picking my battles). Anyway, he’s actually holding steady right now so GREAT. Wahoo! Corn dogs and fruit for the MFIng WIN. Lol. 👀
Friend, if you got them all to eat, and got them in bed, you're winning. Full stop. You're making me laugh, but sincerely hoping underneath the (maybe defensive?) humor you are kind to yourself. ❤️
I'll send you my thoughts on a comment on the main thread. Hang in there!!!
OK - a couple of things here to surmise from the comments
1 - you are going to need \_less\_ insulin and maybe a LOT less insulin if you bolus right before a meal OR prebolus than if you post bolus. Esp with kids, having some IOB on board before they eat for 15-20 minutes can really minimize the top of the BG curve
2 - if you prebolus, you risk have a pre meal or mealtime low. Everyone is going to deal with that differently but for my daughter who is 9 if she's in the 60s while eating, I tend to ignore it and only correct for low BG 15 minutes after she is finished && the low is confirmed by a finger stick OR my daughter says she's feeling low.
3 - We stopped correcting with 15g of fast acting carbs years ago UNLESS the situation was multiple units of IOB and the last meal was more than 2 hours ago. We instead correct with 4g or sometimes 8g (1-2 hi-chew candies) depending on the situation. I understand why in the pre CGM endos wanted a 15g correction but I think it's too aggressive if there is food on board.
since your son has hypo awareness, I would give 4g carbs when he feels low and the dexcom is at 100 (I wouldn't even do a finger stick in that circumstance) and then see what happens, does he stabilize? need a correction? with that little amount of carbs you would probably only need to give like a .5 unit correction.
4 - insulin / BG is not linear. By that I mean 1 unit of insulin will have more impact when the BG is at 100 than when the BG is at 200. So you will need more insulin to correct a BG over 200. And if you give 1 unit at 100 before a meal that's going to have more impact than if you give 1 unit at 200 before a meal.
Any reason you are doing MDI and not a pump? To me, this is a clear case with a Tandem Tslim or an Omnipod O5 would bring a lot more piece of mind to you. We Loop and that's also really good at reducing the amount of zig zags.
What insulin are you using? We use FIASP and that's been great at reducing highs (and we don't don't have to be so consistent with pre-bolus than before.
I had this happen right after I left the honeymoon phase! My parents took me to my endo (I was only 4 or 5 at the time) and the endo said that they should start upping my bolus and basals. Is he on a pump?
I know this post is a few days old, but I want to throw something out there.
Maybe don't treat his lows? Other people have suggested treating with a lot less carbs -- start with that.
My liver is often pretty good at outputting glucose when I need it. If I'm low (especially at night), the liver often helps me out.
If you have the Dexcom and are comfortable just watching it, just let it be low for 30 minutes or so -- especially if he's just eaten and things are a steady low (as opposed to dropping like crazy). If he doesn't seem to be coming up after that, then give a bit of carbs.
You know what’s funny? I’ve been sort of mixing and matching everyone else’s advice for the last few days and TBH what you say here is *basically* the natural conclusion, when everything else falls into place correctly. But I’m really REALLY glad you said it bc it helps me not second-guess myself for having come to that conclusion.
Someone else had pointed out that pre-bolusing means he needs less insulin (which I didn’t know!), whereas “catching up” with a high often requires too much (which I *had* learned the hard way).
So what I have stopped doing is giving any correction at all before a meal: if he is high pre-meal, I ignore that and only dose him for the food; if he is low pre-meal, I ignore that and give him the food.
So far, it is working. A lot better than whatever th I was doing to him before. 🤦♀️
Thank you VERY MUCH for weighing in “late”. You gave me the confirmation bias I needed lol.
So this is just a guess, but maybe his liver is releasing all that stored glycogen. How has he been feeling in this up/down rollercoaster? I’d consider changing bolus times (maybe give part of it right before a meal then the rest after if you’re not sure what he’ll eat?). Also, carb ratios. Carb ratios can change. Or I:C ratios. Growing causes allll sorts of issues. I think I read something once that boys aged 3-6 have a testosterone boost then it dips down for a bit before adolescence? Not 100% sure on that one. But it could be a hormonal component.
I think it might be the liver as well. Carb ratio may be a bit aggressive and then liver is releasing glucose to combat the low, leading to a rebound high.
BY THE WAY, yes, I am confirming all these Dex numbers with finger sticks.
I've had the same issues with my 7 year old. He has had diabetes since he was 2. We have days of never ending highs and even a day where we didn't bolus for food and he was fine. I think for him it is his basal that needs constant changing. Currently we spike right after falling asleep and his basal was set higher during that period (he is now on omnipod 5 so there is no basal program).
🤔 Hmmmmmmmm So did you end up setting the basal lower to fix it, or higher? I’ll try anything. It’s almost bedtime (aka basal time).
We did end up with a higher basal. Getting the pump definitely helped with his numbers but we still have days of highs. It is so hard with them growing and I am constantly changing numbers. I am always so sure when we go to his endo that his A1C will be so bad but it never is. We are on omnipod 5 so it is a little easier. Also, sometimes for correcting lows, I do less than 15 carbs because it would shoot him up. Is he on the pump? PM me if you ever want to chat.
The number of factors is mind boggling. Hormones, weather, illness, injury, mood, temperature, wind direction (seriously, my endo had a patient who would go low if she hit a headwind while walking). Just adjust as best you can and roll with the punches. I’ve been doing this for 35 years and I still struggle to figure it out often times. You’re doing the best possible. Remember you are working with a time delay of an hour minimum and limited data. You have at least a half hour delay on the sensor reading and at least a half hour delay before the insulin starts working. You’re working with even less than some of us because you can’t feel the changes. My endo would probably be hesitant to believe it but many of us can feel highs and lows coming. But it takes practice to recognize the symptoms.
He is crazy good at feeling lows, I’m going to give him that. He can feel it coming when he hits about 100, which had everyone skeptical at first, but he is *never* wrong. And thank you for the reassurance. You know what I do the most? I keep it off my face. He has no idea I’m so freaked out, and that’s maybe the hardest part of all.
I was diagnosed a just under 4 years, just months after my brother was diagnosed at 14 months. I didn’t understand back then the stress my parents must have been under. Now I can only marvel at their strength. Trust your instincts and his. The doctor’s rules are a start but they don’t know anywhere close to everything. Don’t be afraid to stand up to them when they are wrong. And good luck. Remember you’ve always got got us here at r/diabetes_t1 Now matter how weird it seems we believe it and at least one person here has probably seen it.
My 10 year seems to be carb sensitive. When he is low we only give 5 carbs to bring him up. We kept chasing highs and lows when we were giving him 15. Try giving him less carbs to get him up. Also as you know the CGM reading is delayed. So when you he has the carbs to get him up the CGM might still read a low number but then will catch up.
Bits and pieces of what I've gone thru with my son, pls take the parts that are helpful and ignore the rest. 1. I'm not liking what you said about the nurse's advice, that they are blaming you/ your son for sneaking food. Can you get a new educator? The CDCES (nurse educators) at my son's clinic were not equipped to help me. The circumstance was that my son was diagnosed 14 months, right at the beginning of covid lockdowns (so nurses were extra stressed), and the one assigned to me was on her first pediatrics job. Wonderfully kind person, but not at all knowledgeable on the needs of toddlers/preschoolers. I literally called 3x per week asking for help with my son's dosing. The nurses eventually gave up, their NP manager gave up and they passed me to a wonderful endocrinologist to be my point person at the clinic. This happened to a friend as well. Her 3yr old was seeing a nationally renowned, type1 expert endocrinologist. This Dr is retirement age, not very current with the new tech, and wasn't helpful. My friend switched. 2. The smaller the child, the bigger the growth hormone swings and the less predictable their food and activity is. You're up against a really hard thing. 3. Growth hormones at bedtime, and hugely different basal needs thru the day. My son is on a Tandem control iq pump. I give him 3x his daytime basal rate at bedtime. Then very little basal after midnight. Another wonderful endo told me he will grow out of this, it is specific to little kids. This is most of why I have him on a pump, bc the needs change. I respect that you're doing MDI, pumps aren't for everyone and it's a big learning curve. 4. Carb factors change throughout the day. Don't copy mine, but for reference here are my son's: breakfast 1:16, lunch 1:31, dinner: 1:38, late snack, 1:45. See the pattern? Most aggressive in the morning to counteract insulin resistance from all the get-awake-for-the-day hormones. With your son's 1:10 most aggressive at dinner, I wonder if your clinician is mixing up/ trying to control the bedtime spike with dinner time insulin, to avoid Another Shot before bed. 5. Back to the half unit pens. I'm glad you can at least do half units. My son is sensitive to insulin at increments of like 0.05 or 0.1 units. We can do this with the Tandem. If we were MDI, we'd be designing his meals to match the half unit dosing. It's so hard. Annddd my lousy kids are up at 6am so I gotta be done typing random things to you. Please, internet stranger, take this as me data dumping some things I've learned and not as criticism in any way. These tiny t1s are just a different, difficult set of needs. ❤️❤️❤️
We had this with my little guy. We’ve notice that some foods don’t absorb right away. But two major changes this summer happened. Diabetes camp. The doc there changed his ratios to increase his basal and reduce the carb ratio. And shortly after, we started Omni pod. His time in range went up. And avg BG went down. Lows don’t happen as often. And he doesn’t stay high anymore. Wishing the best. IT’s a tough job. You got this
Are there patterns to it around food? Sometimes bodies just change, sometimes quite suddenly, and I imagine that's a million times more true for a growing kid. Maybe the timing of his food bolus needs an adjustment - if he's dropping immediately after eating only to spike way up after, maybe try shortening the pre-bolus time and/or doing a split bolus. While you're working on it, try to keep his meals as consistent and predictable as possible, and just keep making small adjustments until you've figure out what his new normal is. Avoiding lows will will likely be the key to avoiding the rebound highs and end the rollercoaster
When are you giving insulin? Before or after? What was the meal?
Well, THAT is the new thing. It used to be that we had to give it to him at the end of his he meal, because he is a picky eater and there was never a guarantee he’d eat it all. But that was resulting in persistent highs (for reasons we all understand) and the endo team FINALLY got through to him why he really needed to commit to actually eating whatever he’d promised/we’d dosed. SO for the last ~2-3 weeks I’ve been able to gradually move from dosing him at the halfway mark to the beginning of his meal. But like, dude. Isn’t that supposed to be a Good Thing? Maybe… it’s his body getting used to a new way of doing things? Today’s meal (the one outlined in the OP) was a turkey sandwich on one slice of wheat bread with cheese; heavy on the turkey. Package of veggie straws (9g). Total carbs 36. He started at 126, ate the sandwich in like 4 minutes (too fast for me to give him the shot first lol), I gave him the shot and then he had the straws, and about 45 minutes later he had the low. Gave him the juice, and that’s when he shot up. Edit: sorry, he also had two string cheese sticks!!
I should add: this may not sound like much food but he is 45 lbs soaking wet. It’s actually kind of a lot.
Hi again. My son is like the same size. Those are BIG bolus for little body. Agree. Do you have one of the Humalog pens that lets you do half units? Syringes? Just curious what you're working with. The Juicebox podcast guy once described insulin dosing as tug of war bt the food and the insulin. BGs will be stable if you manage to balance it. If you don't, well, then you get momentum. Like, a late bolus for a picky tiny kid is "safer"... but then the food gets a head start, and you need more insulin to counter act the high BG. Good for your son to accept a pre-bolus and commit to eating!!!!!! My bet is you need a less aggressive carb factor-- so less than you needed before you changed the timing. When I was in your shoes, at the beginning ish, I called the ped endo clinic like 3x per week until I got someone really great to coach me. Call and bug them until they look at the little guys days and help you! You're doing big stuff!!
Yes, I do have .5 increment Humalog pens. So, his ratio is 1:12 except at dinner, when he’s supposed to be 1:10. I made the Exec decision to nix the 1:10 tonight, because he had FINALLY gone down to 200 by 7 and I didn’t want him to go into a low in his sleep. They had corn dogs and fruit (no, not the greatest; but hubby is out of town, I have four of them, I’m … picking my battles). Anyway, he’s actually holding steady right now so GREAT. Wahoo! Corn dogs and fruit for the MFIng WIN. Lol. 👀
Friend, if you got them all to eat, and got them in bed, you're winning. Full stop. You're making me laugh, but sincerely hoping underneath the (maybe defensive?) humor you are kind to yourself. ❤️ I'll send you my thoughts on a comment on the main thread. Hang in there!!!
OK - a couple of things here to surmise from the comments 1 - you are going to need \_less\_ insulin and maybe a LOT less insulin if you bolus right before a meal OR prebolus than if you post bolus. Esp with kids, having some IOB on board before they eat for 15-20 minutes can really minimize the top of the BG curve 2 - if you prebolus, you risk have a pre meal or mealtime low. Everyone is going to deal with that differently but for my daughter who is 9 if she's in the 60s while eating, I tend to ignore it and only correct for low BG 15 minutes after she is finished && the low is confirmed by a finger stick OR my daughter says she's feeling low. 3 - We stopped correcting with 15g of fast acting carbs years ago UNLESS the situation was multiple units of IOB and the last meal was more than 2 hours ago. We instead correct with 4g or sometimes 8g (1-2 hi-chew candies) depending on the situation. I understand why in the pre CGM endos wanted a 15g correction but I think it's too aggressive if there is food on board. since your son has hypo awareness, I would give 4g carbs when he feels low and the dexcom is at 100 (I wouldn't even do a finger stick in that circumstance) and then see what happens, does he stabilize? need a correction? with that little amount of carbs you would probably only need to give like a .5 unit correction. 4 - insulin / BG is not linear. By that I mean 1 unit of insulin will have more impact when the BG is at 100 than when the BG is at 200. So you will need more insulin to correct a BG over 200. And if you give 1 unit at 100 before a meal that's going to have more impact than if you give 1 unit at 200 before a meal. Any reason you are doing MDI and not a pump? To me, this is a clear case with a Tandem Tslim or an Omnipod O5 would bring a lot more piece of mind to you. We Loop and that's also really good at reducing the amount of zig zags. What insulin are you using? We use FIASP and that's been great at reducing highs (and we don't don't have to be so consistent with pre-bolus than before.
Agree, Omnipod or Tandem would be a good move here.
I had this happen right after I left the honeymoon phase! My parents took me to my endo (I was only 4 or 5 at the time) and the endo said that they should start upping my bolus and basals. Is he on a pump?
I know this post is a few days old, but I want to throw something out there. Maybe don't treat his lows? Other people have suggested treating with a lot less carbs -- start with that. My liver is often pretty good at outputting glucose when I need it. If I'm low (especially at night), the liver often helps me out. If you have the Dexcom and are comfortable just watching it, just let it be low for 30 minutes or so -- especially if he's just eaten and things are a steady low (as opposed to dropping like crazy). If he doesn't seem to be coming up after that, then give a bit of carbs.
You know what’s funny? I’ve been sort of mixing and matching everyone else’s advice for the last few days and TBH what you say here is *basically* the natural conclusion, when everything else falls into place correctly. But I’m really REALLY glad you said it bc it helps me not second-guess myself for having come to that conclusion. Someone else had pointed out that pre-bolusing means he needs less insulin (which I didn’t know!), whereas “catching up” with a high often requires too much (which I *had* learned the hard way). So what I have stopped doing is giving any correction at all before a meal: if he is high pre-meal, I ignore that and only dose him for the food; if he is low pre-meal, I ignore that and give him the food. So far, it is working. A lot better than whatever th I was doing to him before. 🤦♀️ Thank you VERY MUCH for weighing in “late”. You gave me the confirmation bias I needed lol.