Almost 11 year daughter getting a lot of highs

My daughter is almost 11, diagnosed about 8 months ago. The last few days she’s been having a lot of highs…high 200s and in the 300s a few times. We tested for keytones and no trace, thank goodness. The nurse/hotline is not calling me back. My feeling is to up her doses, go up on her basaglar (24 hour insulin) and a little on the humalog (for meals). Since her diagnosis we’ve had numerous dose adjustments. it seems everytime we seem to get in a decent range for a few weeks, it suddenly changes again!

Ill be 30 this year, T1 for 15 years, and I still have to make constant adjustments. I need a different amount of basal on the weekend versus workdays, based on my activity level. I also need different carb ratios throughout the day. I can imagine that a 11 year old, growing girl is going to need a lot of fine tuning to her regimen. Its never going to be perfect, its only ever going to be close for a particular day’s set of circumstances.
An analogy i tell non-diabetics is that the pancreas works like a person driving a car, and the car is your metabolism. We want to drive it at the speed limit(target blood glucose). To speed up the car/metabolism, you hit the gas pedal or give glucagon. To slow down the car/metabolism, you hit the brakes or give insulin. For type 1 diabetics, neither the gas pedal nor brake pedal work, and the car is sitting on top of a big hill. So we just use insulin/brakes to keep the car from speeding up to a dangerous speed(Blood glucose). If we give too much, and slow it down too much, we dont have a gas pedal (glucagon) like normal cars to get back up to the speed limit easily.
Now imagine you’re driving across the country, and i tell you that you can only hold the gas or brake at the exact same amount for 24 hours at a time. Thats your basal shot. Sometimes you’re going to need more or less speed, you might encounter traffic or a big hill, but your speed was determined yesterday when you took that big shot of Lantus/basalglar.

Occasional spikes into the 200-300s happen. At my ratios, thats like being off by 20-50 carbohydrates when eating a meal, which is going to happen sometimes. Different types of foods and carbohydrates will get digested at varying speeds too, google “glycemic index” for more information on that. Whats important if she isnt getting ketones or frequent hypoglycemic events is her A1c. Unlike a car, your metabolism isnt going to get into an accident, so we really just want to drive, on average, at a safe speed that gives us good fuel economy and doesnt cause unnecessary wear and tear.

I cant express how valuable a CGM and pump are to managing, though I know its not the best option for everyone. My CGM gives me daily averages and bolus averages. I can see the average, in 5 minute increments, of how my blood sugar looks after a particular meal for a period of days, weeks, or months. It makes it very easy to dial in carb ratios.

@mogirl hi, yes insulin needs can vary and yes it’s common to have to adjust daily.

Are you sure she’s not eating and not telling you?

Over the next 6 months it would be good if you got comfortable with how to adjust insulin yourself. Your nurse practitioner, or CDE or even a doctor can help. If you want to learn yourself please consider the book “Think Like a Pancreas “.

If she’s not eating in secret then you can either increase insulin, decrease carbs, or add exercise. But please if you are not comfortable then work with the doctors for now

Good luck

Hi @mogirl, I’m not at all surprised that your daughter may need more insulin to cover her food consumption no than she did a couple of months ago - it is just the nature of diabetes. And in the same vein, the time will be when a reduction in meal-time insulin: carb ratio will be absolutely necessary. As @Joe said, it may come to the point that daily adjustments will become necessary.

Close observation of your daughter - that is, how different foods, activity and the administered insulin affect her - is important; and keep a record so you can look back over a couple of days. I don’t recommend increasing a meal bolus just after one “high” reading following a particular meal but rather after you see a pattern developing; for a severe “low” after a particular meal should be addressed immediately and probable bolus ration put in place for the following day.

I’m NOT a licensed medical practitioner but my suggestions are based on more than 60 years if living well with diabetes. With the use of a good BG Meter, and frequent checking [for periods of the day that give you concern, check BG 2, 3 and 4 hours after eating], should give you insight on how much the dose should be adjusted; I began making these adjustments years before the first digital meters were invented.

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Unfortunately change is constant with T1D, and especially for kids. My daughter was diagnosed at age 10 (now 13) and we adjust her doses pretty regularly - and did even more so in the first weeks and months after diagnosis. You are doing the right thing by checking ketones. As long as ketones are negative, the high BGs aren’t such a big deal. Of course we all want to minimize them over the long haul, but a few days won’t make much difference in the long run. If you are comfortable adjusting doses, do it in small steps and adjust one thing at a time. If her BGs are running high overnight, it may be the basal insulin that need to be adjusted. It it is only high during the day and 3+ hours after meals, it’s more likely to be the insulin :carb ratio that needs adjusting. If you have a CGM, that makes it a little easier to see the effect of your changes. If not, you may need to do more frequent finger sticks to monitor.

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Have you considered an insulin pump? For me, things got much easier to figure out after I got my first pump in 2001.

My daughter was diagnosed at 10, almost 2 years ago. Puberty is really challenging for T1D girls is what we are learning. We have several days each month where minimal carbs and lots of insulin still result in 300s. Then we have several days each month where we keep giving her more and more carbs and she’s low no matter. It’s a never ending series of tweaks and adjustments, and w just hope to get a little better at it all the time. There is never an exact right or wrong answer or way to do things, so don’t strive for perfection, it’s just not possible. But, we can do this, and talking to others is super helpful, so stay in conversation.

Hi diabetes mom. You’ve already gotten a lot of feedback about your daughter’s numbers. I would just like to suggest - at the risk of stating the obvious - that if your doctor’s office is not responding to your needs, you might want to shop around for another. I’ve found it’s helpful to have a group practice: even if you see one particular doctor, another can help out when necessary, and hopefully a larger staff means better response. Having a diabetes nurse educator on board is also very helpful.

This is normal. My 10yo daughter is going through same things. They have adjusted and adjusted nothing is working. Children’s has told me it is hormones and just to hang on for the ride. They will try to make adjustments but… we are on cgm Dexcom G6 but no pump. I feel like a failure. We started using Dexcom 04/22 and looking back, ignorance was bliss. Now we have alarms going off all night. My husband and I are fighting about how to handle the alarms. They told us to let alarm, set for 90 min. See where that goes, well… the timing is off, so if I wait the 90 min it has been putting her too close to when she is supposed to be waking up and taking morning insulin and eating, they don’t want that because that stacks the insulin and causes other issues. I hate this damn disease.

HI @Katsumcat, stacking insulin refers to if you have a high blood sugar, inject insulin as a correction, and then inject again before 4 hours. “stacking” means you’ve now put in a correction on top of a correction and haven’t waited… that’s all.

it’s perfectly OK to correct a mid-high blood sugar at meal time, while also adding insulin for carbe… example if she needs 1 unit to drop her blood sugar 50 mg/dl and she needs 1 unit for every 20 grams of carbs.:

if she wakes up at 190, and eats 20 grams of carbs, it would be ok to give her the 1 unit as correction with another unit (that’s 2 units now) for the carbs she ate… 4 hours later she will be in range… of course, if everything else is working…

if I am low in the morning I eat my breakfast and don’t bolus for all the carbs, so that my blood sugar will rise after the meal and drop back into range afterwards… it’s like the 2 birds with one stone thing.

this isn’t fun… and you are not a failure you guys a learning something really hard…

Joe- I may not be saying it correctly. So we have a sliding scale. She takes Lantus (the only long term) at dinner time. Then if needed depending on scale she takes bedtime shot. Then the alarm starts going off around 3:30 lets say for high. I set it for another 90 minutes and wait. So if it is still high next check is 5am. If I treat at 5am with the sliding scale because she is high that puts us into less than a 4 hour window for breakfast… so then at 7am she does her does insulin off sliding scale the endo gave us for breakfast, since it has been less than 3 hrs since previous dose are we stacking? Or do we just wait until 7am and use sliding scale which will take into account her high at that point? I guess this is where I am getting confused. The sliding scale they have given us is for a 60 carb meal which she normally does eat, we have adjusted up if she is going over 60 and rarely down and she almost always finds a way to get in 60 carbs. I am also finding that this week she is all about having honey nut cheerios and 2% milk. I measure both to ensure we are counting correctly and these seem to effect her sugar in a different way vs. same number of carbs from frozen eggo waffles and sugar free syrup.

Hi @Katsumcat. I think you are being totally clear. That scale is a way to deal with a the blood sugar plus the meal and can get or can make it more confusing than it needs to be for in between snacks and for if you want to separate the issues

Let’s say at 5 am she’s high and you used the scale. Technically if the scale was perfect then in 4 hours her blood sugar would be in range. So at 7 she wants to eat breakfast you have to give that shot based on carbs only and not for still high blood sugar. It’s probably necessary to start the scale from normal blood sugar for the 7 am shot and it’s not “stacking”. I am assuming the doctor gave you a scale for just corrections and a set amount for meals. By all means if the scale is only mealtime and has a meal amount built in then you SHOULD NOT use the scale if it’s not mealtime.

In the coming times, it’s better to know how much insulin to correct (a sensitivity number) and how much for carbs (a carb ratio number) so you can completely separate the issues and so she can kind of eat what she wants rather than to eat prescribed number of carbs.

Since you have to remember if you’ve corrected and how long it’s been, you have to develop a good note keeping habit or other means and you have to be comfortable doing it. It takes time please don’t be too hard on yourself.

You can work with a cde or you can learn the sensitivity and carb ratios method yourself if you are interested.

As they grow, these numbers and the lantus basal requirements will change. This is inevitable. In a sense, you have to manually adjust all the time.

The early morning blood sugar spike is normal, I get it and my insulin pump has to up my basal rate from 3-6am. Everybody calls it the “dawn phenomenon”.
You could also adjust the time that you are giving Lantus. For me, Lantus started peaking in several hours and tapered off over the remainder of the day. I would take it right before bed so that it would be more potent overnight, you may also have luck shifting it back if she has a later, non-linear peak.
Are her blood sugars dropping from 3:30 to 5am? It seems odd that it would peak at 3:30 am and then drop without correction.
Personally, Humalog has an activity time of 3 hours in my body and Novolog of 2.5 hours. The doctors often suggest an active insulin time of 4 hours as a “safe” starting point. If you want to do some more advanced bolus calculating, stay with the same number of 4 hours. If you give her a shot at 5 am, roughly 100% of the bolus will stop working by 4 hours later, or 9am. So, at 7am, only half of, or 50%, of the insulin is gone.
The fine calcultion is to-

  1. At 7am, check BG and use sliding scale to determine correction bolus.
  2. Divide correction bolus from 5am by 2(since half of this insulin is still in the blood)
  3. Subtract the remaining insulin in step two, from the new insulin in step 1. This is your new correction bolus amount.
  4. Add new bolus from step 3 to sliding scale calculation for breakfast carbs.

Example-

  1. Blood sugar measures 278, sliding scale says 3 units of correction bolus.
  2. 5am bolus was 4 units, 4 units divided by 2 is equal to 2 units still in girl
  3. New bolus of 3 minus 2 units active is equal to 1 unit needed.
  4. Cereal is 50 carbs, sliding scale says food requires a bolus of 7 units. Add 1 correction unit from step 3. 7am bolus of 8 units needed.

If youre not comfortable, bring it up with your doctor. It is a way to allow closer corrections without stacking. As everyone said, you can only stack corrections. If you eat food, and eat again two hours later, you must take insulin for the food and it is not stacking. Carb ratio bolus cannot be stacked, only corrections.

My insulin pump does these anti-stacking, sliding scale calculations on it’s own. I would suggest getting more comfortable doing it yourself before entrusting a machine, but the insulin pump really does make calculations easy, among its other amazing abilities. You just tell it how many carbs you are eating and what your BG is, and it does all the math for you.

I am so grateful for this community and the thoughtful responses. Thank You! It really helps to feel not alone on this journey. It is still so new for us, but learning more and becoming more confident with managing it all the time. We made adjustments to my girls Basaglar (24 hour shot) and her carb: insulin ratio and we are doing a bit better this week, but still some spikes. The one sure thing about Type 1 is there is no day off!!

Hi there, I was diagnosed around that same age, 18 years ago. There are sooo many variables that influence blood sugar levels, making it so frustrating at times.

Highly recommend this book- “Dr. Bernstein’s Diabetes Solution”.
Written by a Type 1 Diabetic Doctor, so he has tons of firsthand experience! I wish someone told me and my parents about this book when I was first diagnosed. It’s very thorough and helpful! I call it my diabetic bible. Knowledge is power.

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