Help! wild ups and downs, desperate

6 yr old girl on mini med pump and enlite sensor. Been using pump for one year. For several weeks, with some days being worse than others, we have been seeing highs and lows so frequently that treating is all we are doing. The last few days have been the worst with having to sleep with her to keep it above 40 and below 500…

I need a bright idea. despite being T1 and nutritionally well educated and very diligent, it feels like my husband and I are untrained people off the street, that’s how bad her numbers are. Here’s what we’ve already considered.

Pump site location
Effectiveness of insulin (expiration etc)
Increased exercise
Basal and bolus rates (changing with the tides on Dr.s orders but no help)
We have some pretty rough experience with hormone factors because of her diagnosis of begnine premature adrenarcy. But these
numbers don’t match the changes we saw with that.

We have had experience with highs and lows and trends of both. But never spiking up and down so frequently. We are both with her all day. So I don’t understand why following all the rules and using mom instincts can’t get her straight. It will take over four insulin corrections to bring down an extreme high. And it will take up to four doses of carbs to bring up the lows.

Also, the care link site is not showing the data trends from her sensor so she might be at 40 for an hour at night without it showing on the reports. The lag time on the sensor is so slow that threshold suspend may not truly take effect until her real bg is 50, allowing it to continue down to 40 or even 20. Medtronic does not have an option for raising the low number on the threshold suspend setting above 90.

Calling the Diabetes educator will only result in us changing the dang pump settings again. I’m ready to take her to the er In the morning. We are all too burned out and clearly whatever we are doing is wrong. I cannot watch her hovering close to death several times a day. Why isn’t there help??? Why do we have to manage on our own??

hey so sorry about your daughter’s difficulties. We have to manage on our own because we have to. There really isn’t any other option with this disease.

so, reading your description, if I had to guess, I would say you are suffering from bad insulin absorption, due to scarring (re-using infusion sites) or a recent issue with her infusion system itself, or hormones (insulin resistance). And then in desperation you are stacking boluses and then fighting the eventual absorption with a bunch of carbs. many people have problems with absorption when using plastic cannula type sets.

top rule out the infusion sets, you can switch to shots temporarily or switch sets using the metal cannula (sure t is one example)

for me, increased activity can decrease my required insulin (both bolus and basal) by over 50%. Sometimes more. Stress (including stress hormones) increases my required insulin by 50-100%.

in over 35 years treating t1, I have never, ever had an issue with insulin potency. I never used a bottle out of expiry, either, but I have left insulin at room temperature for months.

Don’t blame yourself, everyone, even your kids, is/are different. whatever you may have learned that works for you might not work as well for your daughter. If you don’t have the book “Pumping insulin” please consider getting a copy. take care and good luck!

We use the metal sure t sites but the bolus stacking and carb stuffing are a problem. it’s just like chasing our Tails. But we don’t do it out of fear, it’s necessary to keep her alive/out if ketones. Also, with highs her stomach hurts. It’s just too much. Is there some kind of statistic on early heart attacks for care givers?

i bet there is. =) can you convince her to eat low carb for a few days? figuring out if it’s the sites or her body, I think, is really important. other growth hormones in kids can also cause big swings in insulin requirements. figuring out dosing is easier when there are very small meals or low carb/low fat meals. my favorite rule of thumb for t1 is the rule of small numbers (small numbers small mistakes, big numbers big mistakes). just a thought. maybe if you can keep her to a couple meals with maybe 15 grams carbs? just until you figure it out?

testing at +2 hours after eating always gives me an idea if I am going to track after a meal or not, the rule is if you are about 50 mg/dl higher than you were before the meal the bolus was about right (this is for a straight bolus not a correction + bolus)

the number on her her meter is not a judgement of you - it’s just a number. you are always doing the best job you can.

Joe, I just want to say “thanks” on behalf of all the other families of the newly-diagnosed folks out here in the ether. You’re providing such an incredible service: reassurance, information, and ideas. I’m so thankful to you and all the other voices of experience on this board!

I feel for you, the “helplessness”. In my almost 60 years T1D I’ve had times like this and especially in the last few years. I’m not a Medical Doctor, but based on experience and study I offer the following.

I suggest moderation, both on correction bolus and carbs to treat lows. Over-treating lows is easy and almost automatic reaction - both for the person experiencing the low and for those who care for and help. What “rules” do you use? When treating my lows when I am alone, I try to use the a “15 and 15” rule - 15 gram of very-fast acting carbs and retest in 15 minutes. Repeat as necessary. If my wife notices me “acting funny” she will try getting me to drink 8 to 10 oz. of OJ - i.e., 26 to 30 grams of carb.

The highs: What kind of fast-acting insulin do you use in her pump? Humalog and Novolog, although having similar factors are NOT the same [entirely different formulations]. An informal survey among people on another blog all being T1D for more than 50 years] found that pump tubing and infusion sets MAY become clogged by crystallization of Humalog - but not by Novolog.

The “stacking” of insulin in the body from a series of bolus can happen - I did that a year ago and it took three paramedics and two bags of IV D-50 over an hour to stir me from a 10 BG. So, two things to watch: 1) know the sensitivity of insulin [ 1 unit will lower BG how may points in 1 hour] in her for that time of day; 2) how much active insulin is in her body at that time. Medtronic pumps have an “Active Insulin” calculation, but this is correct only if you have entered correct values in her pump. and sensitivity will change with the season; I use less insulin in warm weather and also in warm weather my insulin appears to work faster.

@srozelle - thank you for your kind words! these online communities are really great when we share experience strength and hope. When I was diagnosed there was nothing, it was very isolating. I know how terrifying it is to struggle with this in the beginning. just pay it forward =)

1 Like

We use all of the pump/sensor functions and trackers. She definately has some hormone issues going on (begnine premature adronarcy) but that typically just causes her to trend with higher insulin needs than the average 6 year old.

The humalog crystallization, temperature adjustments, and low numbers=low errors are all helpful new information.

We were using a 15/15 rule for lows but her Dr. Switched her to 10 carbs/15 minutes to prevent going too high.

Do you guys have any idea why in the past, 1-2 carb corrections and 1-2 insulin corrections would work for highs and lows but now it’s taking 2-4 corrections in either direction to budge it? For example. Last night she suddenly (and without any apparent cause) dropped to 40. Sadly this is becoming a multiple daily occurrence. It took an hour and a half of dosing carbs and retesting to budge the 40 to a 60!! I can’t find any scientific reason for this. Her pump was turned off and eventually we unplugged it feeling unsure if it was still accidentally delivering insulin.

The same problem happens with the highs. We spend our entire day with this. Only lately though and despite troubleshooting pump levels and settings with Dr.

I feel like as much as I hate the hospital I wish she would just be admitted because I can’t stabilize her. How have you all ever gotten into the hospital?

Thank you so much for your advice and encouragement.