Don't know what to do!

My 10 yr old has been Type 1 for a year now things have been going pretty good. Recently she has been having highs where they don’t even register in her freestyle lite. So I’m guess 500+. With corrections she doesn’t come down even with carb dosing for meals she doesn’t come down enough (still in the 300s). Over night she still continues to rise with corrections. Her Doctor doesn’t know the cause and just increased her Lantus dosage. Anyone experienced this before, with some insight on how to handle this situation?

Find another Endo, and get a Dexcom G6.

That has to be scary! I’m a G6 fan, but no CGM is perfect. When readings are running unusually high or low, it’s important to verify with finger sticks. Also important to test for ketones - you can get test strips at stores like Walmart. Your daughter sounds young, but it might be that hormonal changes are kicking in. If it’s possible financially, consider an insulin pump such as the Tandem X2 with Dexcom G6 integration, and a good endocrinologist.

WALMART TEST TESTER AND STRIPS ARE A GREAT IDEA for backup. I have been a type 1 for 60 years. I discovered these testing supplies when I had terrible insurance. I paid $10 or $15 for the glucose meter, and the strips are $17.88 for 100. I compared the test results with a more expensive meter and they were in the same range. I like that I can test many times if I need to when I’m too high. I would also see a better doctor - one who will listen to you and your child and get to the bottom of the problem. There are so many doctors in this world that you don’t have to stick to one who isn’t helping!! I have found over the years that many doctors treat you like a “textbook case” instead of as an individual. And a word of encouragement: I was diagnosed at the age of 5 in 1960, back when people didn’t survive past 40. Because my parents were very smart and my mother was a nurse, I have had a very normal life and am still going strong! Good luck :smiley:

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My daughter has the G6 but right now I’m Depending on finger sticks. CGM reading 358 finger stick reading 496 thats a big difference! I’m sticking with the higher reading by how she is feeling.

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Hello @Sammy3 Samantha and welcome to TypeOneNation. In the year following diagnosis it is very common to need more insulin. Dosage changes will be a regular thing until your child is well into their teens. I am honestly a little shocked by your doctors response but often they are too busy for proper communication.

Type 1 is a disease where the patient eventually makes easily 95+% of the dosing decisions. For me, I make 100%. As you get more comfortable with insulin, these decisions will get more routine. In the meantime you should probably read “Think Like a Pancreas” if you need a little backup.

Stress and illness often creates a short term change in insulin requirements and the way you tell is by testing. Please check back in and let us know how you are doing.


Hi @Sammy3 and thanks for reaching out. A couple of things I’ve discovered are true for me:

  1. If I hit 300 (hers may be different) no amount of fat acting insulin will bring me down until I’ve washed the ketones out of my system. Just or two glasses of water along with a correction starts bringing me down, even if it takes a couple of hours and it’s only a few points to start.
  2. If water and corrections don’t work, in my case is usually a sign of an infection, often a problem with a tooth that I didn’t address in a timely manner. If I have the slightest dental pain I head to the dentist. I have a result great practice which has helped me with my fear of dentists, but often it turns out I’m in need of a root canal.
  3. I also make an appt with primary care doc and ask to be tested for infection. One of the PAs at my old PCP’S office acknowledged that we diabetics know or own bodies, and started me off with a UTI culture. Turns out that’s what it was (for me). I had no burning, pain or other typical symptoms - my only clue was the blood sugars.
  4. Some people simply don’t respond well to a particular formulation of insulin. For me Humalog and Novolog work exactly the same, but some people have very different results. It might be worth looking into. If an alternate is not under your insurance’s formulary, your doctor may be able make a case that their preferred one doesn’t work if everything else gets rules out.
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Hi Samantha @Sammy3, you have received many good suggestions so I won’t reiterate other than strongly suggest that corrections should be based on finger-stick readings and always with either fast-acting or rapid acting insulin. To answer your question, I have NOT had your daughter’s experience - at least not in the most recent 40 or 50 years.

At all ages, insulin requirements are in a state of flux and need careful and constant monitoring - something a doctor can not monitor as effectively as you can. Adjustments in background [her Lantus] insulin is critical and most difficult to achieve, but adjustment in her meal-time insulin to carbohydrate ratios is fairly simple and you must learn how to make these changes - but always VERY carefully and conservatively. Always wait more than a day between making any changes. Her “insulin sensitivity”, used for correction doses, also needs to be validated from time to time.

Since about 1960, I have not depended on doctors to do more than make suggestions for changes in insulin dosing - I make the changes, as needed, and report the changes at my next visit to the doctor.

Hi! My Son was diagnosed a year and a half ago at age 11. As he has entered puberty, things have gone crazy. We were noticing that at night so between say 8 PM and 3 AM… He was spiking like you were talking about. It seemed like we could triple the insulin and it still wasn’t enough. We asked the Endo and they said that growth hormone spikes in the evenings and it competes for the same sites as insulin. The problem is it’s not an every night thing because as we know, kids have growth “Spurts” so maybe that has something to do with what you’re experiencing. I did like the suggestion of checking key tones and drinking water because I think that might be one of my battles – not taking Ketones seriously because we are still fairly new in this game and haven’t dealt with that much. So sorry it’s so hard… we are frustrated that there is no “normal” but everyone says after puberty… :roll_eyes:

You should definitely use finger sticks when making dosing decisions. I have also found over the years (48 yrs Type 1), that when my BG is over 250 my correction ratio changes. If my BG is less than 250, my correction ratio is 1 unit brings my BG 100. But over 250, it is nearly double that. 1 unit insulin only brings it down 50. But be patient and cautious! It always takes hours to get it down and you don’t want her to crash too low.

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Hi Samantha, there is some really good information in all of these responses! I would just add that the dosage, for my 14 year old daughter anyway, is always needing adjusting due to so many factors, activity level, stress, illness, hormones. Growth hormone is secreted in the early hours after falling asleep and can raise blood sugar. I am concerned when your endo says he or she “doesn’t know the cause.” It sounds like adjustments to the Lantus, correction scale, and carb ratios are needed and this is not unusual! Best wishes and I hope you get some good guidance from this doc or another soon!

Hi Samantha,
Could she possibly be getting an early period? Only asking because my bloodsugars skyrocket like that too right around the time of my monthly cycle. Its due to hormones and no matter my correction doses they take a long time to come down. I know shes only 10 but something to maybe consider.
Also when mine wont go down the two things that work EVERY time to lower it is to drink a couple glasses of water and get my heart rate up for about 20 mins. Go for a jog or ride a bike or something.
Hope you get everything figured out, its scary when that happens!

The whole situation is a mess. What people post, what results I get, what the endo recommends, All I can say is depend on yourself------ do NOT listen to anyone else.I am unsubscribing from this site ----don’t need input from lost souls. All it does it makes things worse,
good luck guys,lGoodbye!

I am guessing your child is eating more carbs during the day than you might suspect. Lantus also plays a key role in the over night high blood sugars. If you can keep the daily carbs down and up the lantus your child should start seeing a change. I am a Type 1 for 42 years now and never used a pump. My A1Cs are consistently between 5.2-5.5.

Hi Sammy
My first thought when seeing your post was to ask about your daughter’s “honeymoon” period. When I was first diagnosed I needed relatively little insulin since part of my pancreas was still working. It was only after many months that my insulin needs started to rise and settled down to my current needs (32 years later). So maybe it is that? Your endo should be able to inform you about the honeymoon period. Beyond that, the suggestions in the other posts sounds good. I have found over the years that my BG is a good indicator of carbs I eat, Insulin I take, and how “efficiently” my body is working: Illness, lack of sleep, stress, can all raise my BG, while exercise, sleeping well, feeling ‘good’, etc can lower and stabilize my BG.
Good luck, Barry