My son was diagnosed 8 months ago and we are still trying to figure it all out. We are both very frustrated with his constant highs for seemingly no reason. We pour insulin into him 24/7 and still he stays over 300 a majority of the time. So the other night he made
Himself a few grilled burger patties. He didn’t have buns but he dosed himself for some ketchup and waited the 30 mins. He even over dosed the insulin to cover any Mis calculation. After eating the burgers with no bread and some ketchup he shot up to over 400 even though he dosed before eating. What gives here? No matter what he doses for he always shoots up so high. And it’s a battle for the entire night trying to get it down. He gets frustrated because he feels deprived of bread for a good cause and then he shoots up anyway so he may as well have had the bread. How do we
Handle this realistically and emotionally?
Dr has prescribed him U200 but it took several weeks
To get it approved by ins. So I have not gotten it yet. He is on the omnipod and dexcom G6
Hi @Lburg86 Linda, it’s tough to say what normal is. There are many reasons for blood sugar to rise. Protein breaks down releasing some “sugars” as well as the metabolism of fats (burger is 10-30 percent fat by weight, raw) can increase blood sugar. Stored liver sugar gets released in the presence of stress hormones as well as when trending low. Liver stuff and stress hormones are best addressed with an endocrinologist. There are companion therapies along with insulin that help control this. There is no hard and fast rules, your son may benefit from T2 medications along with insulin. Certain T2 drugs are designed to increase insulin sensitivity while limiting the liver dumping sugar stores.
The important thing is to not give up, not lose hope, because you are measuring the important thing (blood sugar) and you are learning what to do. No one is awesome at this even after many years of experience.
If he can get into the habit of some kind of exercise, even mild walking, after each meal it could be helpful but be warned- exercise after taking insulin can make the insulin 2x more potent. Keep an eye on that CGM.
Hi Linda @Lburg86, As @Joe said, there really isn’t any “normal” with TypeOne. You have consulted your son’s endocrinologist and it is possible that the U-200 may help your son.
An option that you could try, is stop using the OmniPod for meal bolus and let him take shots for meals. Let your son try this for a while and see if his BG readings make a positive change. A next step would be to discontinue pump totally and add a background insulin. I’m not a medical doctor, so consult first with the endocrinologist who knows your son and his body - for some reason, pumps do not work for everyone.
He just started with the pump. He was on MDI for almost 8 months with the same results. We are still trying to find his right dosing I guess. It’s just hard with a teenage boy who is 6 feet tall and eats every hour. Very hard to stay ahead of his numbers. We are always chasing it. What makes it so much harder is he is too old for mommy to prepare his meals and snacks so I have zero control to know how to help him dose correctly. I see his G6 numbers double arrows up and I’m texting him to dose dose dose and to not eat anything else until he levels out a bit. But that leveling usually doesn’t happen before he is starving again. Then the cycle starts all over again. Then at 8pm he’s begging me to let him have a shake from his favorite wawa store that is right up the street. I just cringe at the thought but don’t want to tell him no so he can hate His condition even more. He’s beyond the age of asking mommy for snacks so I give him the control and just try to limit him the way I would if he didn’t have T1D
Hi @Lburg86. Please forgive me if it sounds like I’m playing 20 questions but I do have a few to consider:
You said (I’m paraphrasing) that your son runs consistently high. Has his endo looked into adjusting his basal rates? I understand the instinct to bolus frequently since he runs high, but I had made some self adjustments (I’ve been pumping for about 20 years now) and my endo said my boluses were out of proportion to my basal rates, so we made some adjustments to the basals, which helped.
He eats every hour - is that even close to literal? I knew teenage boys like to eat, but that sounds excessive, if you mean it literally. I’m no doctor but I believe there are disorders that can affect a person’s ability to feel full, so they eat even though they shouldn’t be hungry. Perhaps your doctor could look into that.
He is a teen so this term won’t be appealing, but does he see a pediatric endo? They understand the hormonal and other considerations that impact teenagers which may not apply to older adults.
Does your son keep a log of what he eats (yes, the dreaded log!). There are some excellent diabetes apps that are easy to use - I use Mynetdiary and have found I do much better when I track with it, than when I do not.
Has he seen a dietitian? I’ve been diabetic for over 50 years and my endo refers me to one every now and then to tighten things up and get a refresher. There is something called the glycemic index: foods that fall at one end raise your blood sugar quickly but don’t stick with you; while those at the other end cause a gentle rise and keep you stable. There’s more to it than just the carbs, so it might be worth looking into.
Many years ago I participated in a food sensitivity
study. As I recall, the premise was that some people may react strongly to a particular food despite bolusing correctly for the carbs. That’s the best I can explain it - sorry - but it may be something to look into with a dietitian.
I use a pump and have found that if I’m running high, and even switch to injections to bring me down and they don’t work - it’s a sign that I have an infection. I’ve had the occasional UTI with no pain or discomfort whatsoever; and a mild toothache I ignored that ended up needing a root canal. In those cases, literally the only thing that suggested something more serious may be going on, was my blood sugars. As an aside, this might be something for his primary care doctor to handle. I suspected an infection one time and had an appointment with me endo the very next day, so I waited to ask him about it. He said he didn’t handle anything outside of endo and told me to see - you guessed it - my PCP. Check with your endo to see if s/he handles “other” issues before you waste time and money on a visit.
And finally (at last!) some people find they simply can’t use a particular type of insulin. Options with pumps are limited so hopefully that’s not the case of he wants to keep using one. I grew up when insulin was U40(!), derived from beef and pork, and one I believe was called protamine zinc. Yes, it’s been a while. One they started making insulin in a lab using recombinant DNA technology, some people said that only the old pork insulin worked for them - or the newer one worked but not as well. That’s drastic and highly unusual, and I’m not trying to make you panic. Just suggesting that there are a number of insulins available if he is willing to go back on MDI. Pumping may be considered “the” treatment now, but some people do just fine on shots, and actually prefer them. I knew you said your son started with shots and had the same results, but returning to them with a different insulin might be worth checking out.
Keep us posted on progress.
A brief response. For me, if I was experiencing several days similar to what continues for your son, I would carefully evaluate my basals (just like Dorie @wadawabbit posted, above). If my basals are not right, bolusing for meals, and correction boluses just don’t work. Mention this to your son’s physician.
Yes he sees a pediatric endo. We really like his Dr he is always adjusting basal rates and ratios. Now we are going to try U200 humalog and see if that helps. One thing it will help is to make his pods last a bit longer.
The glycemic index interesting. I will definitely look into that issue. For instance a few nights ago he was in a normal range at 100BG and had burgers without the buns and only a few servings of ketchup. He dosed for the ketchup and waited 30 mins. His BG shot up to over 400 for several hours. So we learned ketchup is very bad. We are still figuring this stuff out. That was one time I was able to do a very controlled test with him and know what it was that made him so high. But usually we just end up frustrated because there is constant eating and snacking and I never have a clear idea of what made him so high. That’s the super frustrating part. If he were younger I’d have more control over the testIng learning tweaking part of this. It’s very hard at his age to control what he is eating especially when I’m working 55 hours a week and I’m coaching him through text.
Thanks to everyone for the replies and kind words of encouragement
Hi again. I just responded to your post on another topic and am glad you are finding your way around on the forum! I try to be an encouraging person even if I’m being up front with people. Unfortunately written communication lacks the nuance of tone of voice, etc. that you get verbally, so I just want to say that I hope things I write here don’t come across as judgmental - just observations and suggestions.
I hope you get your U200 insulin. Actually I didn’t even realize there was one until you mentioned it! It took my back to childhood - when I started taking insulin it was U40. Then scientists came up with what was probably the big diabetes breakthrough of the time - U80(!) - and my doctor cut my dosage in half. Later they came up with U100 and my dosage decreased by 20% (if my math is correct, which it very well may not be:)). Anyway, this was back in the day before BG meters, much less CGMs, and we checked our urine instead of blood for sugar. As best as we could tell the urine tests stayed consistent - with the half dosage of U80 giving me the same results as the full dosage of U40. Aside from that there was no difference. So while U200 will give his pods longer life - an important consideration - it still won’t get to the bottom of the issue with your son’s blood sugars and there are still things he will need to do to get to the bottom of the mystery.
In your post to parents you shared that he’s eating in secret (sneaking food) and is frustrated by his numbers. As one who has been doing this for a very long time, and can testify from personal experience, he’s going to keep a log to help figure out the mystery. He will need to log everything - and I mean everything - he eats, as well as exercise, etc… Believe me, I know what a pain it is - I started back in the days where you had to track everything using pencil and paper(!) but it’s that honesty that helps the endo/dietician/diabetes nurse educator understand the numbers. There is a saying in the business world that “What gets measured, gets managed.” I use a diabetes tracker (Mynetdiary) and sometimes I’m not as vigilant as I could/should be. I’ve found that accurate and complete recording makes a huge difference.
I love my sweets - I admit it - and I came up back in the time where sugars were absolutely forbidden (my mom would practically leap across the room to tackle me if she saw me reaching for a slice of pie). Now that we understand carb counting and have insulin/carb ratios in place, we have more freedom. Not to say that we shouldn’t make wise and healthful food choices, but we can work things in now. I think I’m starting to ramble (apologies) and I’m sure I’m not telling you anything you don’t know. But hopefully you will be able to convey to your son that if he keeps good, honest records, his team may well be able to find settings that work for him and let him incorporate things he enjoys.
I don’t know how long your endo has been working on adjustments, but keep in mind, as much as you like your doctor, switching is always an option. I had an office I liked but there came a point where I wasn’t getting the care I needed so I found someone else. It may be that lack of complete info is keeping your endo from finding the right rates and settings - in fact I suspect that’s the case - but if that’s not it there’s nothing wrong with finding a new provider - and your son may be more responsive to someone different.
I saw on your post to parents that your son found a “pod pal” at school and I really hope that helps get him on track. As you encourage him in his friendship make sure he keeps in mind, the settings and corrections his friend uses are customized for him specifically. Hopefully your son will adopt some good habits from his friend, but he shouldn’t duplicate what is friend does.
Forgive me if I’m sounding preachy - that was the reason I opened with my “disclaimer.” Just sharing my thoughts as always, and hoping that your son gets settled soon.
Lol your disclaimer statement made me laugh. I totally get what your saying. I love what you said about encouraging him to document what he eats so it can be worked in and that we he can start to enjoy the things he likes at times with somewhat proper control. That may encourage him to log it. I think when we have mentioned logs in the last he took it as a way for us to see what he is eating so we can show him how wrong he is and that his food is to blame for his high numbers which means we will take it away. So the mere
Mention of a log makes him shut down. Maybe your idea will help him see it’s not to judge him.
Glad you took it so well! If I might further respectfully suggest:) - my mom used to always get on me if I reached for a candy or something sweet. I understand now that she meant well but it made me feel bad and just get fed up. Which in a teenager is another cause for rebellion - at least it was with yours truly. If he feels like people are giving him a “hard correction” perhaps it would go over better to suggest alternatives, or see if he’s willing to share with his hungry mom so he doesn’t eat the entire piece of pie or whatever. You never know…
I’ve heard of looping and it’s the reason I was considering the tandem pump before we got dexcom. We have so much to learn yet. I don’t know enough about it yet to even know what we need. I’ll look deeper into it. Thanks
Hi Linda. My daughter is 12, so I can relate a bit to be sure. Getting the basal figured out in his age range can be a challenge, and it can change quickly with puberty and growth hormones. Once suggestion is to see if you can get him to do some fasting periods so you can see what happens to his numbers when he had no insulin on board other than the basal. It’s amazing how a 0.5 basal increase per hour can make a huge difference, so getting that figured out could make all the difference. Over the holidays with no school is the perfect time. Track it overnight once IOB is 0 and how have a decent number. Let him stay up really late one night and sleep in really late so you can see how a morning goes with 0 IOB. My daughters numbers had been really good for about 6 months, and all of the sudden we started seeing bad highs a lot. I normally can make tweaks and resolve it, but it nothing was working. We ended up having to make significant basal increases (.5 to .75 per hour) and now she’s having really good numbers again. You could also try some temp basal increases to see how they do. Ketchup, we found a great alternate. Heinz No Sugar Added. It has a blue label. I can’t tell a difference in the taste. Much lower carbs (1g per Tbsp instead of 5g per Tbsp), in fact sometimes she can still have some even if she forgets to count it, and her carb to insulin ratio is 1 to 5 right now. Anyway, just some thoughts based on my experiences.
Hi Linda @Lburg86 , “looping” is a shorthand for “Closed-loop Automated Insulin Delivery system”, that is, a pump and CGM working together to reduce or eliminate hypoglycemic events and increase Time-In-Range [TIR].
Often “looping” is used when talking about DYI, non-commercial systems. The only FDA approved AIDs at this time is the Medtronic 670G system. The Tandem Basal IQ, FDA approved, has some of the automated features but does not deliver automatic bolus insulin; the Tandem Control IQ, not yet approved by FDA will most probably be the first comprehensive AIDs.
@lberg86 You mentioned several times he would dose and wait 30 minutes. It’s possible the ketchup, in this instance, is on the far side of the insulin curve. Someone mentioned the glycemic index, which is a part of it, but does his pump have the ability to dual or ‘wave’ some call it believe? In basic terms, give him X units up front, then extend the rest of the dose over a period of time.
I have a weakness for pasta, and the way I usually win that battle is a ‘dual’ bolus’ of X units, extended over 3 hours with 50% up front, and a temp basal adjustment of 15% for 5 hours. It’s a tweek and adjust game until you find the right pattern that fits him.
Note that ketchup is full of sugar which raises the BG quickly. The buns of the burgers would raise his BG less than the ketchup. In either case, you need to take enough insulin to cover the grams of carbohydrates.
There should be someone at his endo’s office to do the coaching. You should not have to do it.
However, hormones also affect blood sugars, so they could possible enter into the calculation as well.
I agree with everyone else, but I have an additional comment. Have your son been given an “insulin antibody” test. I am allergic to my insulin, the scale of the test is 0-5 I came in at 55. Please ask your son’s endo. to run this test. Keep me posted. Hang in there. Bye for now Jan
your disclaimer statement made me laugh. I totally get what your saying. I love what you said about encouraging him to document what he eats so it can be worked in and that we he can start to enjoy the things he likes at times with somewhat proper control. That may encourage him to log it. I think when we have mentioned logs in the last he took it as a way for us to see what he is eating so we can show him how wrong he is and that his food is to blame for his high numbers which means we will take it away. So the mere