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My Son's Type I Diabetes - A Year After Mind Blowing Nutritional Realizations


#1

To preface, probably the first unexpected thing that I found over the last year was that my son required the same total daily dose of insulin if he ate 30% carbs or if he ate 60% carbs as long as his total calories stayed the same! The reason: he became less sensitive to meal time insulin when it was combined with fat and protein almost exactly to match the decrease in carb intake for the day. (Now he DID have incredibly better blood sugar readings with the lower carb diet, but it did NOT decrease his insulin requirements, it just lowered his peak blood sugar after meals, so if someone is insulin resistant or type II diabetic, reducing your carb intake and replacing it with fat or protein may not decrease the amount of insulin your pancreas has to put out at all! because the increased fat makes you more resistant to your own insulin to match for the decrease in carbs. You WILL however get lower peak blood sugar levels, lower average blood sugars, lower A1Cs, and lower blood sugar means less damage to the beta cells of the pancreas, but it doesn't mean less demand on the pancreas.

My son was diagnosed with type 1 diabetes just over a year ago. Prior to that time, I had personally favored a high fat, but not super low carb diet, about 100 grams of carbs or 20%-30% base plus some additional carbs post intense workout. I never pushed that on my kids or wife, but my oldest daughter and my wife and I all eat basically a fat based diet with 30% carbs.

Since my son's diagnosis I have spent most of my time thinking about how to manage his diabetes and insulin. He fortunately went into virtual remission at about 3 months where he could actually get back to fasting blood sugar numbers within about 3 hours after a meal without insulin. His case was unusual because I could give him insulin and his own pancreas would just dial it back to match for the meal.

At about 6 months in, his mealtime needs started to rise. At that time we got a continuous glucose monitor. Also he had developed an aversion to large amounts of carbs because they had made him feel bad for quite a while leading up to diagnosis. As a result he was only getting about 1100 calories a day and I started adding fat to his meals, but still keeping 30-40 grams of carbs in each meal. I used a combination of beef, dairy fat, and olive oil with occasional seeds and limited high linoleic oils and canola. This let me get him about 1600 cals a day which is recommended for him: he is small, closing in on 10 years old and 55 pounds, but very lean.

Anyway, he remained very stable in a "honeymoon" where his pancreas helped out especially at night for another 6 months, but in the last 4-5 weeks he has lost about 90% of that help and is almost completely covered by injected insulin. We are right on the edge. In the last 6 months we have been able to have what is considered to be supra-tight control with average blood sugar weekly averages of 110-115, only a few days with averages over 130, and only occasional peaks over 180. This is extremely rare even with a diabetes honeymoon. We have also avoided all but 3-4 short periods of hypoglycemia.

Anyway, I am starting this thread for 3 main reasons. 1) I think it will be therapeutic. I am pretty burned out by the last year. I stopped working out and tried to get back, but haven't stuck with it. I can't write too much science on the "parents of type 1 diabetes kids" website because there are a lot of very defensive people who are understandably more concerned with how to manage their kids day to day life and give them as much normalcy as possible. 2) I have experienced and researched the effects of diet on blood sugar in particular for hours a day for the last year. I have made discoveries that I never would have imagined. Pages worth. I will start with one: when my son transitioned from a carb based diet to a 30% carb diet with higher fat content, he needed TWICE as much insulin to cover the same amount of carbohydrates as he needed when he was eating about 60% carbs! That's right. He is not insulin resistant. A unit of insulin will lower his blood sugar by a normal amount for a kid his size (about 80-100 points) but he needs a unit of insulin to cover just about 10-12 grams of carbs while kids on high carb diets only need about 1 unit per 20-25 grams of carbs! So in other words, his insulin needs are basically the same over the course of the day eating 30% carbs as eating 60% carbs given the same amount of total calories-in a later post I will discuss some of the research I have read about why a high fat diet causes muscles to actually become insulin resistant....3) my third reason is that I hope that there are smart people who can help me reflect on this last year in light of their knowledge of nutrition to help me manage my son as he loses the last 5% or so of his help from his pancreas.

Some teasers in case anyone would like to open a conversation along any of these lines:

1) People who eat 30% carbs or less will often fail a glucose tolerance test because of physiological insulin resistance, but the effect goes away within about 3 days of eating higher carbs.

2) People who eat <30% carbs will store more intramuscular fat, more fatty acids IN their muscle cells, and will increase fat burning enzymes in their muscle cells AT THE EXPENSE of storing less glycogen and less glycolytic enzymes. Their body will however use more fat at different workloads as someone who eats high carbs, and they will tend to store less fat as adipose and have lower basal insulin needs and also have better blood lipid profiles.

3) Protein does yield glucose. The amount depends on whether the protein is consumed with few carbs or with high carbs. Protein consumed by itself largely turns into glucose, but that is not necessarily anything against higher protein levels for athletes. I used to hold that protein above about 150 grams a day was a waste because it did not increase protein synthesis, but now it looks like bulk protein serves largely as a slow source of glucose that prevents the body from tearing down muscle 4-6 hours after a meal to turn into glucose via gluconeogenesis.

4) Tight control for a type I diabetic is considered to be an average blood sugar under 155, most peaks under 180 (for adults) and fewer than 2 treated instances of hypoglycemia a week (or less than 10% of pre-meal blood sugars being in the hypoglycemic range) and 50-70% of the time coming to a meal with a blood sugar between 70-130. For a kid my son's age, the standard is even higher, about a 170 average (which very few achieve) and a 70-180 blood sugar at meal time at least half the time, with most peaks being under 225, and fewer than 2 weekly treated instances of hypoglycemia.

5) The average type 1 diabetic has an average post meal peak blood sugar of 247, and has a peak of over 300 at almost half of their meals. Less than 1/3 of teenagers maintain an average under 170 (A1C under 7.5).

6) Type 1 diabetics don't just lose insulin, they also lose a hormone called amylin that is produced by beta cells. This hormone helps delay the entry of glucose into the blood from the gut, and also tells the liver to not spit out large amounts of glucose after a meal (or sometimes for no reason at all). Type 1 diabetics ALSO typically get dysfunction in their alpha cells causing too much glucagon release (blood sugar raising) when it is not wanted, like from a mere stretch reflex. One experiment showed a man;s blood sugar went up about 100 point to around 200 after eating a head of lettuce (repeated with different types of lettuce) simply from a reflex in the intestines that makes the pancreas release glucagon. In most people the glucagon is matched by insulin. A type 1 diabetic can literally raise their blood sugar by eating cardboard. Also problematic is that after about 5 years most type 1 diabetics will not release glucagon properly when their blood sugar is low anymore so they lose the ability to hormonally fix low blood sugar.

7) There is a profound difference between moderate, low and very low carbs on the way the body functions. 30% carbs, <20% carbs, and ketongenic diets (less than maybe 10% and also limited protein) are really very different in terms of whether the body is using fat, burning muscle protein for fuel or using ketones for energy.

8) As insulin levels drop in non-diabetic individuals, this is a signal that blood sugar is low and other sources of energy are needed. (In type 1 diabetics usually happens when blood sugar is HIGH because they didn't inject enough insulin which creates a crazy problem that blood sugar, gluconeogenesis, lypolysis and ketosis all happen at the same damn time!) Anyway as non-Ds insulin drops, it first signals glycogenolysis, where the liver will spit out glucose from glycogen. As insulin goes lower, the next two things that happen are 1) The body releases cortisol and the liver startes breaking down protein (ie muscle) to turn into glucose AND OR the body starts to activate lypolysis to take fat out of adipose cells and mobilize it for use as energy. Now this is interesting because some people may start breaking down muscle with low insulin levels (low carb diets) while others may turn up fat burning first. When insulin is injected or raised, it can suppress protein catabolism OR fat mobilization and burning! So what determines if your body is going to break down muscle or burn fat when energy needs rise? This really is THE mystery of lean muscle building. ANYONE?

That's it for now. This is a break for me because I need to get out all of this stuff that I have run across over the last year, hoping to release some stress and maybe help me work through my son's final stages to full-on type 1 diabetes. I am tired of the parents of kids with diabetes site for now. My wife is a cardiologist, but she needs us to be as normal as possible when she is home and not "talk-D" but since nutrition and human performance have been a big part of my life prior to my son's dx, I think it will help me. I also need people to help get me back to workout out again-man that has got me depressed.

Thanks all

Mertdawg (Joe)


#2

Very interesting. After reading Proteinaholic I've looked over some studies regarding muscular insulin resistance (MIR)and diet. What I found contradicted everything I thought I knew about diet and MIR. I've recently switched over to a diet high in carbs and low in fat and also lowered my protein intake to around 150 grams per day. This is my first foray into scientific studies and I'm still learning how to read them properly. After I do some more reading I'll come back and post what I've found.

Sorry to hear about the problems you're having with your son. I hope you're able to figure out the best way to proceed with him. Good luck.


#3

One thing that I ran across is that while intramuscular fat is associated with muscular insulin resistance in type 2 diabtetics, ATHLETES also tend to have high amounts of intermuscular fat, but they remain insulin sensitive. Part of this is because they actually have enough muscle to store significant glycogen AND also to store fatty acids in and around them, and they also use many metabolic pathways so their muscles retain enzymes for different energy substrates.


#4

I've seen these studies as well, but they are studies conducted on endurance athletes.


#5

I thought that might be the case.


#6

Here's the big T-World question. When insulin is low why is fat mobilization sometimes preferred, and sometimes protein breakdown into gluconeogenesis is preferred, and also when insulin is increased (by food or other) why does it sometimes preferentially support muscle growth and other time fat building? (at least on balance).


#7

I'm not sure I have much to contribute ... but I just wanted to tell you that you're a great Dad. It's pretty cool that your son has someone with your knowledge, curiosity and tenacity to take care of him. I'll speak from experience and say that the fatigue can be pretty overwhelming when you combine kids with complex problems and a personality like yours. My wife could totally relate to yours by the way (We deal with the overwhelm differently). I don't know what it's like to deal with diabetes (can't imagine), but i do have a 3 year old with a rare digestive disorder (still can't digest any type of food properly ) and 5 year old with autism so I kinda know what it's like to be overwhelmed by your kids issues and to be constantly searching for answers and help. The work your doing is changing your son's life for the better.

Just curious...Do any of those factors change for your son or in the research based on the timing of intense exercise? Not sure if there's any decent research on that.


#8

Mertdawg, as a Type 1 Diabetic myself, I know firsthand the difficulty in controlling this disease, but I could not imagine having to manage someone else's blood sugar, Especially your own son!
I have met my share of Type 1's and Type 1 parents and it has always amazed me that they do not educate themselves more and rely almost solely on doctors (what a joke) to manage this thing. You have my deepest respect for taking this by the horns and wrestling it to the ground. A great Dad indeed!
I was amazed at some of the findings after my diagnosis as it relates to training and nutrition myself. It is indeed frustrating that sufficient fats at a meal (and even protein in sufficient quantities) require a bolus and there is so much more to consider than just the carbs.

With your son being so young and still growing and hormones still fluctuating, I can only imagine that it will be years before he is able to balance his BS with any reliability-and even then the number of factors involved is just crazy-but it seems with your help he may just succeed! Keep at it! I know life can be veeery close to normal (my last A1c was 5.9 without going crazy)
I would caution keeping his BS to close to normal for fear of lows. I have had quite a few scary lows myself that weren't felt, but since I am so anal about testing they were caught in time. A CGM is a great tool too, but I assume you know they are not exactly 100% reliable...
I look forward to hearing more of your journey!


#9

What does this mean?

(FWIW, I'm following this conversation to learn stuff, but I'm pretty sure I have nothing to contribute.)


#10

I may hazard a thought on these questions.
One thing that struck me when learning about insulin is that what the bodybuilding world has been saying for years is true. Training/activity uses glucose. We all know that. But after training (with weights in particular-or with activity that forces the muscles to use up it's stores), the level of insulin sensitivity is enormous. For example, I normally bolus 1 unit novolog per 10 grams of carbohydrate at most meals. After lifting (@ 1 hour of intense training) 3 units can net me 100 grams of carbohydrate! The amount is almost always dependent on the volume done along with intensity (so going through the motions with low weight wouldn't do the trick alone, or low rep high weights either) but moderate weight and moderate intensity can almost always be relied on. And this effect is less pronounced the further from the training session you get. So I bolus immediately after training and my muscles soak up the carbohydrate like a sponge. But if I wait a few hours after training before bolusing and eating, the effect is much less pronounced (of course by then I have probably had a low as my muscles suck up the glucose from my blood without a bolus anyway).

An important take home point here is that my body is primed after training to build/keep muscle. It's hormones are aimed at that end. It will use nutrients ingested in keeping in line with this purpose for the most part. Hence, I can eat a moderate amount of protein in almost all meals and not have a noticeable rise in blood sugar from it. If I went overboard and took in an ungodly amount, then yes, it would definitely result in higher BS as my body converts what it doesn't have a use for in to energy, but even then no where near the amount an equal number of carbs would. I can eat 40 grams of protein from chicken at a meal and if it is paired with carbs, I just bolus for the carbs alone and it usually comes out right. You are right though that Fat works similarly, but again the amount must be moderate and the tipping point is not exactly set in stone. Anything over 20-25 grams will give me a rise that must have insulin, but still not a 1 for 1 with carbs.emphasized text
Anyway, I tend to ramble, but the main point is that training with weights increases insulin sensitivity and just seems to make your body burn more energy and require less insulin in general. High intensity sprints and similar activities seem to have the same effect, though less pronounce (as in they increase ssensitivity, but don't really cause the sponge effect as much). BTW, SS cardio is utterly useless in increasing sensitivity and has only ever lowered my BS while doing it-afterwards cortisol raises my BS a bit--especially if fasted cardio.
So, when insulin is low, fat mobilization happens if you are in a state where your body feels it needs the muscle to survive (weights are crushing you everyday and you need muscles not to die) so it deems the fat at as expendable vs the alternative of breaking down muscle protein for conversion to glucose for energy.
All of this seems to effect your basal requirements to a degree as well.


#11

A bolus is what it is called when you take an injection of insulin for a meal, or to lower blood sugar when it is high. So you eat and take a bolus of insulin (shot) and if you have calculated correctly, the insulin will lower your blood sugar as the food raises it and a few hours later, when the insulin is out of your system and the food is digested, you would, in a perfect world, have blood sugar levels that are normal again.
I am sorry if I have inadvertently hijacked this thread....


#12

What does your diet look like?


#13

Well, not to go into too much detail and take too much space up in Mertdawg's thread, but my diet is very bodybuilderish I suppose. Protein is the basis of every meal with added fats or Low GI carbs depending on training or timing or goals (the #1 goal is always BS control though-everything else is a secondary). Get those veggies in of course.
During the week, I try to keep each day the same (predictability is a diabetic's friend). 4-5 meals a day plus pre/peri/post workout carbs and whey protein on training days. Extra carbs to treat low BS if needed.
Macros are all counted and taken in to account at each meal though, to be sure I get the right amount of insulin. This can vary and I am proficient enough at this to eat extra food if I am hungry or just want to eat something and account for it with little problem (see- I can be normal :wink:)
And FWIW, there are so many factors that can influence it that getting it exactly right is always "self high five" worthy.
Nothing special really. Just the same old same old stuff we have been told by bodybuilders to do forever basically. The only difference is, if I goof it, I either drop dead from low BS or go high and risk one day going blind, my kidneys failing, or having limb amputations. Kind of motivating if you really think about it!


#14

I have a lot of questions. Do use use a pump or do you use long acting insulin for basal (like Lantus?)

I was wondering how in the heck you know what to do before bedtime based on activity. Do you check at night or have a CGM alarm?

My son uses Lantus and if he goes to the swimming pool after dinner he needs significant carbs per hour in the pool and he still trends low for 2-3 hours into sleep (I've had to give him a couple of 6 gram treatments because he was slipping into the 60s and at his size, 6 grams is about the same effect as 15 grams on most adults, or about 50 points of blood sugar.

But on a high fat diet, muscles store fat inside of them and burn glucose at a much lower rate. What I found is that the ultimate reason for activity based lows with injected insulin is that the insulin prevents fat mobilization from adipose, so it blocks muscles from using adipose for fuel, and it blocks the liver from letting out glucose. This tends to only come into play at higher workloads. So the only way to supplement muscle needs is by consuming carbs.

However on a high fat diet, muscles store fat inside of the muscle cells and adjacent to muscle cells (intramuscular fat) and they can access this even if insulin is high! So my son on a higher fat diet rarely goes very low very fast with activity because he has fat stored on-site for the muscles. Unfortunately this is the same factor that makes him less sensitive to meal time bolus (he has about a 12 to 1 ratio which is very high for a kid his size because the fat stored around the muscles makes them a little insulin resistant (its not just fat that has been eaten recently, but it seems to be a basic physioligical change that happened when he got down to about 30% carbs and 50%+ fat.

Anyway, the basal insulin is beginning to become the most critical thing to management. If it is off, then nothing else makes total sense. I was wondering then about how you manage basal because if his morning injection of Lantus doesn't last through the night he will start to rise and wake up with high blood sugar eventually.

Also as I mentioned it is odd that he can only tolerate about 5 units of basal, maybe 5.5 (about 1 per 10 pounds) and he also gets 100 point correction from a unit of insulin but a 12:1 ratio. 12 points WILL raise him about 100 points though, but his endo (ugh) thinks that it should be easier to cover carbs than to correct for the blood sugar that they produce while in our case it is actually a match.


#15

I will be glad to offer any help I can. I do not have a pump and I MDI. The pump was on my radar for a while, but I ultimately decided it wasn't worth the cost if I could manage just fine without it. I have known a few people who switched back to MDI as it forced them to be more strict with diet-they couldn't just push a button anymore. I use Lantus currently, 17 units each night. As I mentioned, as a rule I use 1:10 Novolog currently (I have used Apidra and Humalog before though) for most meals except post workout. Also, I will usually use 1 unit to lower BS 40-50 points.

I had a CGM for about a year before my insurance changed and had to kiss it good bye, so I am familiar with the little boogers. I loved them a lot and was very upset that I could no longer afford one.
I used to train in the AM around the time I was diagnosed, but when I made the transition to evening training, this worried me a lot. I must say that IMO, testing is the most important part of this. I can not stress enough that testing must be done A LOT, especially when trying to figure out patterns with BS. A CGM will help guide the way for sure, but the old finger prick must be used often as well, to be sure the monitor is in the right neighborhood. I remember they would sometimes wander in the wrong direction. If you don't know where you are, you will never know where to go.

Gosh, there is so much I want to convey here...

It must be understood that the body is always in flux and changing and there are no hard rules with these numbers. It took a long time and a lot of frustration for me to realize that sometimes, even if I do it all right, it won't come out perfect. My goal evolved from perfection (I once sported a 4.9 A1c) to something I could live with long term. I don't mean not to have tight control, but there is a point where it will drive you mad. Even the instruments we use are only "pretty close". A meter is only required (the last time I checked) to be within 20%. That's a pretty big margin for error! And I know my insulin pen from time to time is still leaking when I take it out of my skin, even if I held that sucker in for 10 seconds like a good boy. How much was lost there?!? Didn't sleep well? I might have a 1:7 reaction from the insulin in the morning and fight highs all day. It used to really get under my skin. Then the stress made it worse!
I really just want you to know that it will get better though. Always aim for the goal but don't beat yourself up over just getting close.

At night, I would check often before bed to determine a trend-the CGM will do this for you of course, and don't be afraid to let him run a little high. I know the need to keep it very close to 100, but it is better to risk a slight high than a bad low. I know that sounds a lot like the Endo's advice probably, but my thoughts are that with a little one, better safe than sorry. A bad low at night is way worse than one while awake since it can not be felt. Maybe give him some peanut butter before bed if you fear a low. The fat should bump him up for several hours. That is what I did in the beginning. The CGM is a godsend at night for keeping tabs.
After I train in the evening, I always always eat sufficient carbs to replenish. Sometimes this puts me a little high (sometimes a lot and sometimes not at all) but the replenishing is the only thing that I can think of that has prevented lows at night after training. I have had a few for sure, but as a rule, if I eat enough post workout then I almost never go low later.
Since your son is swimming after dinner, I will assume he has fast insulin in his system while swimming? This would be a big factor in needing so many carbs during training. Since physical activity enhances insulin's effectiveness he would drop while doing pretty much anything. I used to go for walks after dinner before I understood this and got scary low a number of times. The rule there would be to bolus less at dinner and let the physical activity eat up the carbs. You would still have to check of course.
If he is trending low for a few hours you are doing all the right stuff with testing and treating. The CGM is again, a Godsend.

When dealing with Basal, you are right that if it isn't right, nothing else will be either.
Since I take Lantus at night, if it is going to wear off, it will happen in the evening, though I have been blessed that as far as I can tell, it lasts the full 24 hours for me. Out of curiosity, why does the doc have him take it in the morning?

I have to leave work now, but will be glad to discuss more soon.

I would urge you to check out a book called Sugar Surfing by Stephen Ponder and Think Like a Pancreas by Gary Scheiner

The Sugar surfing is very similar to what I do.

Keep working at it brother!


#16

Thanks for all that. My son is not even 10 yet and 54 pounds and we have managed under 6.0 A1Cs at each of the 3 month checks for a year and without a serious low. I switched him to morning Lantus because for some reason he requires a lot of insulin for meals (10-12 to 1) but could not tolerate much basal, and it seemed to have a little peak for him in the first 2 hours so he could go to bed at 1:30 and then be sitting at 70 at midnight. It was complicated by the fact that he had an "odd" but strong honeymoon.

For the first 6 months he took 1 unit per 30 grams at breakfast, lunch and dinner (humalog) and 1-2 Lantus at night. He woke up between 70-105. Here's the weird thing. When I got the CGM I used 1 unit per 30 grams, but after a few days I tried 2 units per 30 grams. Amazingly his blood sugar curve was identical and he ended up exactly the same place 4 hours later and didn't go low. I tried 2.5 units per 30 grams and the same thing happend. I was trying to see if I could knock down his peak which was only about 160 for breakfast, and it didn't help, but no matter what I gave him, 30-1, 20:1, 15-1 or 12-1 he had the exact same blood sugar curve and didn't go low. I went back to 30:1 just feeling that it was safer and healthier to inject less as long as it didn't make a difference. After a while, his peak came up to about 200 for breakfast and dinner so I went to 20:1 and the peak came down, but it didn't effect the 4 hour mark at all. He would be around 100 at 4 hours. Only extra Lantus made him go low more than 4 hours after a meal.

So anyway, when school started (at about 6 months post dx) he suddenly started getting higher peaks. He still was perfect at 4 hours (average about 100-105) but I remembered that he had done fine with more bolus before, so I went higher gradually until he rarely peaked over about 170. His average post meal peak was about 155. His blood sugar average was 110-115 and we didn't have lows.

This was with 1-2 Lantus at night. The endo was upset that he was up to a carb ratio of between 12:1 and 16:1 for his age, but only tolerated 2 Lantus at night. She recommended that I split and try 2 morning and 2 night, but it didn't really help his carb ratios at all. It DID help with a late dinner spike which may be a hormone thing for kids before puberty (to have growth hormone boost blood sugar before bed or around 8:00 pm.

When I split the Lantus the problem was that the morning dose was still working pretty late into the night, like 2:00 am at least, but the night dose had a little peak between about 10:00 pm and 2:00 am so he would sometimes drop into the 60s between 10:00 pm and 2:00 am.

I have some bizarre patterns occurring for him. He peaks very late. If I prebolus 20 minutes for breakfast he will often drop into the 60s and not come back over 100 until about the 1 hour mark, and only peak at about 2 and a half hours. I think this is because he eats more fat and less carbs (about 30%). At school he can come to lunch at 120, get his shot and eat immediately and drop to 70 at the 1 hour mark, but he will rise by 2 hours and at 4 hours he will be flat usually close to where he started.

At DINNER it is crazy. He bolused at 15 minutes ahead of time (he was at about 130). His blood sugar has dropped for an hour to 75, and at 90 minutes he is only back up to 91. If he had gotten active in the first 90 minutes after dinner he would have gone low, but I KNOW he will have a rise between 3 and 4 hours-sometimes just to around 120, sometimes to 160 or so. Again maybe that is just a hormone thing and I am in effect bolusing for an eventual hormone rise that is not related to food. It is great for averages but it takes him an hour after a bolus and meal to come BACK up to 100 (he doesn't usually go low, but he goes into the 70s). Again higher fat? He had a grass fed beef hot dog, reduced carb full fat milk, a piece of toast with olive oil smear, a few ounces of berries, half a bell pepper and an ice cream bar, about 48 grams of carbs with 4 units of humalog. It doesn't seem like a crazy fat meal though it is probably 50% and fairly high saturated. Have you seen such cases where people will have lower blood sugar for an hour after a meal but still end up higher? I've heard about pizza issues, but I can give him just rice noodles, broth and chicken-low fat and he has the same curve-lower for an hour (under 100) but rising between 2 and 3.5 hours.

It makes it hard to "sugar surf" because he has his lows before he has his highs. If I treated him for being 75 an hour and a half after dinner he would be 190 at 4 hours.

He went lower for an hour after breakfast and lunch today with no prebolus before he rose and peaked well after 2 hours. If goes against everything I read about most people peaking in 1-2 hours. Another thing is that corrections work super fast for him. He will drop to the target in less than 2 hours but then stop dropping, but with food the meal curve will go down for over a half an hour, back up to the starting point at 1 hour, and then rise for another hour to 90 minutes and then hopefully clear off by 4 hours. Great for averages but difficult for managing daily activity. Activity though does not usually make him low after breakfast or lunch and I think it is related to him having more fatty acid content in and around the muscles from a higher fat diet.

I don't think I could even transition him to high carbs now. He felt bad after high carb meals prior to dx, so I try to get him 30-45 grams of carbs 3 times a day with a lot of fat and some protein. That is the way I ate, though I would add carbs after working out.

I can't really mess with something that is giving us 110-115 averages, and only putting him over 180 a couple of times a week with no serious lows, but I do have to figure out how to prevent lows in the first couple of hours after dinner. I probably would give him about 6 grams of fast carbs per hour (that's like 15 for a full grown person) and probably something slow at bedtime. I don't like the idea though of wasting a whole night running at 160 (eventually). Still with a little honeymoon he is coming down slowly overnight and usually flat at 105 by midnight and drifting down to the 90s by morning, but we will sometimes get 75 wake ups for breakfast. I watch the CGM all night and do extra checks. Plus on little kids the CGM will give a false low if they lie on it so I only sleep thought the night about 2-3 times a week. I have to roll him off of it and a wait for the false low to come back over 15-30 minutes.

I would be HAPPY loosening control at this age, like a 6.5 A1C but getting less problematic patterns like lows before highs. At his size keeping him from going up from 100 to 170 at a meal is similar to keeping an adult under 140 or so because at 54 pounds he needs about 1600 calories and a gram of carbs extra will put him up around 8-10 points, and a correction is almost as large as his range, so if he's at 160 I have to decide whether to leave him there or put him down at around 100 with a correction. Later his correction factor should be less and there should be more wiggle room, but we do have a half unit humalog pen.

OK 2 hours after dinner bolus and he's at 95 and has been basically flat between 75-100 for most of two hours. Again, usually we get the rise starting about now and he lands anywhere between 120 and 160 after 3+ hours.

Also by the way, kids tend to get their "dawn effect" before bed before they start puberty, but after puberty it is supposed to move to early morning, so the morning Lantus seems to work better now, but we are starting to see the 2:00 am bump sometimes now, and puberty is looming so the Lantus will have to move to night. NOW while the Lantus seems to be weaker by night, he also seems to get more sensitive after 8:00 pm so he ends up with pretty much a flat blood sugar outside of meal curves at all times.

When I told the endo that he was getting 12:1, but going below 100 for an hour and peaking at 2.5 hours from most meals, she told me to cut his humalog in half and try giving it 30-40 minutes ahead of time. I know he'd be over 200 at 4 hours if I did that. We are averaging 113 this week and haven't touched 200, but we've briefly gone into the 60s for 10 minutes a few times and they have all been in the first hour after eating.


#17

I am on my iPad at home so bear with me here. I'm not the best typist even with a keyboard...

I gotta give you koodos again for being so diligent with tracking and figuring this out.

My first thoughts on the delayed bs peak is that you are right in suspecting the higher fat is the culprit. In my experience, the fat is slowing digestion and the insulin is taking effect before the food is raising bs. In a perfect world, food digests at the same rate as the insulin's effect. The trick is of course to match them as closely as possible which I see you are trying to do (and very well I might add). This happens to me if my meals have too much fat (fiber and protein can do the same if there is enough too). I have experienced lows and a late rise just as you have described. The shear size of the meal is a factor too, though I don't see the meal you described as being particularly large.

I would say possible solutions may be to either lower the fat and raise the protein to make up for the calories ( though you are saying the same issue occurred when you eliminated the fat) or wait to give the bolus. You are giving the shot 15-20 minutes before meals, which is great to avoid high bs in a carb rich meal, making sure the insulin has started its job before digestion starts, but if the peaks are coming later, maybe try bolusing right at meal time--or even a few minutes after starting to eat or even post meal.

If we use an illustration ( forgive me if this goes over stuff you already know): when food is digested we can think of the blood sugar rise like the graph on the cgm. You can see where it rises and peaks and goes back down. Now think of the insulin's action in the same way. It is injected and begins takin effect, eventually reaching peak action and then receding back to 0. So if we transpose these two graphs, we can hope they match up.
With high GI carbs, the bs peaks pretty fast and is only brought back down when the insulin kicks in. The solution here is to take the insulin well before the meal so it is in full swing when the high GI carbs hit, minimizing the peak.
With a really slow digesting meal- I am thinking high fat here though fiber and protein slow things down too- the bs peak doesn't come until later and it may not even peak so much as rise and stay there in a kind of plateau. Insulin kicking in in 15 minutes or so, rising steadily till the 2 hour mark then back down, while the fat meal has a very slow rise for the first hour is a recipe for lows early on and highs later just as you have described.
Now, if bs gets back to the neighborhood of 100 with this formula and lows are avoided, all is good. This may even be sought by me at times. That is, if you sat on the couch and didn't do anything. Again you are right to worry about physical activity at this time. A low would be inevitable.
Anyway, that is my thought on that. I would delay the shot myself and have done so many times before if the meal called for it.

On the idea of high carb meals, I am not a fan except around the workout. Given how the body fluctuates and the insulin carb ratio is not set in stone, I actually think high carb meals are a bit dangerous. Let's say I bolus for 30 grams of carbs with 3 units of insulin. There are 3 things that can happen.
1: it works perfectly and in a few hours I am back to 100bs.
2: I am a bit resistant (hormones, stress, sick, whatever) and I wind up a bit high.
3: I am more sensitive, do something physical, or both and wind up a bit low.
Now, with this low amount of insulin and carbs, the damage is not too great. In scenario 3 if I go low, it is not likely I will go extremely low. If however that same ratio and bolus were given for 90carbs (9 units) there is a much greater risk for catastrophe if my body decides it wants to be more sensitive. Or given how insulin's effects are magnified by physical activity, walking the dog might be suicide!
I will rarely give a bolus of more than 5 units at a time. Not that I never do more, but it is not the norm for me. I think it is a wise choice to keep your sons carbs in the moderate range.

Overall, the numbers you are having sound pretty awesome! You are equipping your son to deal with this very well! The mental game is the real challenge after you get the specifics of how this works down. But I think he will do just fine. Knowledge empowers for sure and the only ones I have ever seen in despair are the ones who felt powerless and like they had no control, like victims. There will be a day where he gets to pig out at a Chinese buffet with very little trouble! I still don't dare the pizza buffet though :slightly_smiling:


#18

Hi, a fellow type 1 diabetic here! It's great to see a thread where this stuff is discussed since the info from doctors and other sources is usualy so general and aimed for people who don't have their diets/exercise in good check.

I can echo a lot of what Greenchikin has said and I thought I'd offer my own experiences (although your science discussions might be too out of reach for me).

So, I'm now 24 years old and was diagnosed a year ago. The onset was gradual increase of symptoms for about 2-3 months, then couple of days of really bad high sugar symptoms, after which I went to the doctor, got the diagnosis and what not. At the time I weighed about 90+ kg (I'm 173 cm/5 foot 7 tall)

In the beginning I used about 8-15 units of Lantus a night, no morning Lantus iirc. Daytime was controlled with NovoRapid meal insulin, usually around 1 unit/10 grams of carbs. I only counted carbs for insulin (and still do).

Couple of months in, at the beginning of summer, I had gotten fatter (up to 95 kg) due to laziness in diet, not diabetes. Then I got tired of that and took up a stricter diet. Now year later I'm 84 kg, about 8-10% less bodyfat and feel great (I guess I'm around 14-16% bf now). I use only about 4 units of Lantus in the evenings I haven't trained, and zero when I have. I require 1 unit of meal insulin for every 20-30 grams of carbs, but after training it's close to 1:50 ratio.

Some things I've figured out along the way (obvisously this is just one dude talking, I'm not claiming any universality. It's a relatively practical list, so don't expect any fancy theorizing)

-my "honey moon" seems to be lasting for a really long time, going on for the 10th month. I suppose there's no way of knowing if/when the decline starts, but currently diabetes is pretty easy

-for the past 6-8 months my average blood sugar has been around 5-6 mmol/l (here in Finland we use those units, I'm not familiar with your system). The standard good range is 4-7, 4 being the hypo threshold, so I'm doing really well. I measure often, and I probably go below 4 once a month and over 7 once or twice a week. No bad hypos, since my insulin amounts are so small.

-even though there has been some talk about the GI of carbs not being accurate or important, following the numbers has worked really well for me. For example lentils and beans are great on non-training days, I usually need really little if any insulin for 40-60 grams of carbs coming from them

-starchy high GI carbs are trickier, potatoes being the worst, they spike me as badly as candy or pastries. I do eat a lot of rice though, and that requires the 1:30 ratio.

-fats work "as planned": they slow down digestion, thus lowering my insulin need, but this effect seems to be more pronounced with low GI carbs, up to the point where taking any insulin just lowers my sugar.

-what Greenchikin said about training is very true: steady state means just acute increase in the efficacy of the current insulin, no effects afterwards. Medium volume and medium intensity is great: it doesn't lower my sugars terribly, and afterwards carbs are just sucked in like crazy. High intensity, low volume is better for sensitivity than steady state afterwards, but not terribly good.

-I did a meet on Dec. totaling 535 kg. The rest before the meet week was full of studying stress and bad sleep: this f's my sugars like crazy. Stress makes sugar go high and even few nights of 6 hours of sleep make my sensitivity go down the drain. Usually it's about 50% increase in meal insulin when that happens. The meet day itself was wacky, with a very carb moderate breakfast my sugars went over 10 mmol/l and I needed to use 3-4 units of Novo to get that i order. So sleep and stress are huge factors.

-I occasionally drink alcohol. Those nights are like training days, meaning no Lantus, because drinking lowers sugars afterwards. Also I can eat moderate meals pretty freely, since the alcohol lowers the sugars for me also during. I also try to stay on the higher side of the good sugar range (6-7), just to be safe. For me normal amount of alcohol is about 3-6 drinks.

-Currently I follow 5/3/1 full body with lot's of bodyweight assistance and intervals done afterwards. I haven't done intervals or cardio before this consistently, and now I feel great, but I must say that I don't see a difference in insulin sensitivity etc. compared to just only lifting weights with moderate volume/intensity.

-Before training I eat something like oatmeal and cottage cheese with some PB, sometimes a meal with rice and meat. For the former I don't inject anything and there's is a very moderate rise in blood sugar. For the latter I inject about 1:50, but sometimes I need some a couple of glucose tablets right before starting training (I walk 1km to the gym, which lowers the peak of the pre-workout meal anyways).

-My normal meals are around 500-700 calories with about 30-60 grams of protein coming from dairy, meat, fish (I eat quite a bit of pollock and baltic herring), chicken and eggs. Carbs are usually 30-70 grams form rice, oatmeal, sweet potato (much lower GI than normal potato), chick peas, different kinds of beans and some rye bread here and there. Fats are around 10-30 gramsn: olive oil, avocado, coconut oil and fats from the protein sources. I get about 150-180 grams of protein, 200-250 grams of carbs totaling around 2600-700 cal right now, with the rest coming from fats.

I hope you can get something out of this, even though it seems that you both are dealing with a way more severe situation than I am.


#19

When T1D is diagnosed after puberty is over, individuals usually retain beta cells for many years because the pancreas is full sized and new studies have shown that beta cells keep trying to come back (new beta cells DO form from a small mass that survives after periods then the immune system attacks.

Just having 5% beta cells can allow people to return to fasting levels over several hours.

After T1D becomes truly insulin dependent, even the most active people will need about 1 unit of Lantus per 10 pounds of bodyweight because the liver is trying to put glucose into the blood all day (estimated about a gram of glucose released from the liver per pound of bodyweight.) Also basal insulin is needed to hold fat in adipose cells, but if it is released it causes insulin resistance because any insulin will try to put away the fat first, and also to turn off gluconeogenesis and prevent liver oxidation of fat that leads to ketone production.


#20

Now here is something interesting. This is something I definitely did not know, but have suspected. Is it known how long the beta cells keep chugging along in post puberty dx individuals? The endos I have seen are ignorant on the matter completely and even when I asked if it was possible to know/test whether I still make insulin or not, they didnt't seem to think it mattered too much. Maybe they are right. The treatment of the disease is the most important thing regardless of the how's/why's I suppose, but still, knowing is always better.
In case I didn't mention it, I was dx sept 2013 at the age of 31. This would make my case a different monkey than your sons for sure. At dx, I had a1c of 14. I remember the first shot of insulin and how it felt like being high (stoned) almost. Such a rush as my body finally had some energy after many many months of feeling like total crap. Within 2 weeks I put back on 20 pounds with pumps like I have never had in the Gym.
Anyway, at first, I used only 10 units of lantus a day, and bolused 1:25-30 for meals. That of course changed pretty rapidly over the last few years. Still, there are times I suspect my pancreas is helping out when things work out too well. Of course there are still the times where I ride high and curse it all. If the 1 lantus to 10 pounds holds true as a rule, I could surmise that my body is still supplementing 2 units or so since I am sitting at just under 190. This is the first I have heard of the 1:10lb rule so very interesting. Endos have pretty much said "it varies" when asked what others use as basal, which is so not helpful, or one doc says the average human makes a total of around 30 units of insulin a day total, which is all but useless for comparison's sake. Do they train? Do they eat high carbs? Eh....