19yr old daughter having trouble keeping bg down. 2 DKA episodes this month

My daughter (19), T1D since July 2013 started on the 530G w/enlite in February. It seemed to be going ok and she was working out the kinks with the settings and ratios. Then she got tired of it and went back to injections. However, she wasn’t using the long acting at all during that time.
She was DKA for the first time on May 12 and started back on the pump upon release. She was using it correctly and I believe counting carbs correctly, but had a high bg around 370 on May 25. She entered her bg reading and the carbs in her food and it went from 230 to 370 over the next hour or so. The pump wouldn’t allow her to take more insulin and it just kept climbing and she started feeling sick and having DKA symptoms.
What do you do if you need more insulin than the pump will allow? Are those settings able to be changed? We were told it is fixed at a max output. So how do you bring high bg down then?
We are sitting in the hospital again for the 3rd night. When they had her put her pump back on, her bg started going up again, even while eating their controlled meals and doing everything right. They took it off and she’s back on IV.
What can she do to keep this from happening as soon as she starts back on it again?
Does anyone else have this high of insulin usage? 2 to 1 carb ratio and 2.5 units basal daytime, 2.1 at night.
Does anyone still use long acting injections with the pump?
We would appreciate any ideas to ask her doctor about.

hi onemom

most people have a real difficult time when the “honeymoon” ends and their body stops making insulin completely. the need for basal insulin and more aggressive bolus insulin goes up and there is a period of difficulty and high blood sugars.

first off, if you program a pump bolus or “correction” bolus, and you don’t see a change in 45 minutes, and you haven’t eaten anything, it’s time to start a hyperglycemic (high bs) protocol. you can read all about it in the minimed users guide or online, or better yet, get one from your CDE and pump trainer. (the basic thing - use a syringe or pen, test every 45 minutes). your daughter may need to have her settings reviewed, your daughter may be a person that can’t use teflon cannula infusion sets. (for example - quickset is a teflon cannula type set and very popular) some people can’t use them and need a metal infusion set.

most of the issues with a high bs and the pump “not working” - is the infusion set or site.

I have a lot of experience, so if it were me I would use a “manual bolus” and set it for my correction dose, calculated manually. it’s really important to be comfortable with settings and the trouble you could get into by taking a bunch of insulin, but for me if I overdose a bit I can fix it with juice - i can’t stand being above 200 because of how sick it makes me feel.

so here’s my recommendations:

  1. get the high bs and low bs protocols
  2. get a CDE (or the endo if they are “hands on”) to review the pump settings and if a more aggressive insulin setting is needed
  3. get a book called “pumping insulin” by John Walsh
  4. consider alternate infusion sets

best of luck - I did shots for 29 years and been pumping for a long time now - pumping is great for me but it’s not for everyone.

Thanks for the information. I didn’t know about the protocols in the book. During the 1 training session she had they talked about what to do for lows, but not highs. She’s not very pro-active in going after this information and trying to understand her needs on more than a basic level. I will read that book. I just started reading “Think like a pancreas” and hopefully I can get her to read it too.
The pump seemed to be great that first month, then all of a sudden she can’t get enough insulin from it.

Joe gave good advice.

Is your daughter fairly thin and/or muscular? If so, the standard infusion sets they start everyone on aren’t going to work.

You also mentioned that on shots she didn’t use long acting insulin. Was she skipping the long acting or was it not prescribed for some reason? It may be possible that she’s skipping bolusing or taking her pump off if it’s bugging her doing something else weird. When I was a kid and teen I had different times of skipping shots. It was a rebellion thing and a way of me venting my frustration about my diabetes. People handle the pressure of diabetes differently. I like this article from a few years ago because it captures the issue well. I had to outgrow ignoring my diabetes in the hopes it would go away. At some point I realized that the constant highs and lows made me feel terrible and wasted my time. Then I slowly started doing better.


Yes I agree with Joe -

I have been using the 530G since December.

*Does anyone still use long acting injections with the pump? NO that’s why you have the pump.

I have been pumping for over maybe 19 years and i like it - it works for me. Not for every one.

Carb ratio for me is 12carbs = 1 unit Basal is 1.2 in day and 1.3 at night - run about a 6.8 A1c which is fine for me.


*What do you do if you need more insulin than the pump will allow? Are those settings able to be changed? We were told it is fixed at a max output. So how do you bring high bg down then?

To this I say if you are not getting the BG down fast enough and it’s been hours use a shot of rapid acting insulin - this way you KNOW it is in your body.

You can change the MAX bolus and as Joe says you can manual bolus, but you have to check the settings on the MAX you can do. (Under Bolus see MAX bolus … mine is set at 20, but I have never used that much. I would also say that if you are doing a large bolus do it as a square bolus over 30 minutes - I find it absorbs into my body better a little at a time.

I notice people writing a lot more about DKA - sometimes i do burn ketones – sometimes because I have not eaten many carbs (Paleo diet) or I’m ill. I take additional insulin if my sugar is high - sometimes my BG is 100 and I’m burning ketones most of the day. I 42 years with diabetes i have never had a reation that required a hospital – I drink pplenty of water and go for a 20 minute walk – that’s how we learned to deal with it in diabetes kids’ camps. I know being a Mom and the parent of a diabetic is tough - only because i watched my mother — but your daugher needs to learn about her disease and how to fix things … so i don’t know you or your daughter, but knowledge is POWER!!

Thanks for all the help everyone,

Looking at the pump manual it states the max bolus is 25 units. I am understanding that to mean at no time, ever can you get more than 25 units at one time. Is that right? It states it as 0.0 - 25 units max bolus. That only covers 50g carbs for her…
It says basal range is 0.025 - 35 units per hour. and I believe we were told that per hour max of 35 units was the total of all insulin given in an hours time. When she was on injections still, taking 40 something units or more to cover a meal and correction was not uncommon. And even then she was running higher than normal most of the time. Every single meal or snack had units for correction and sometimes she took a shot just for correction in between meals and snacks.
When she was on injections, she did take long acting at night, but when she started this “let’s pretend I don’t really need all this stuff” phase, she would just take fast acting for meals without any intention to go back on shots, so she didn’t take the long acting… It was just a “take a break from the pump” thing. But it would turn into days or even a week without putting it back on. She doesn’t live at home so, I’m limited in what I even know about her care habits.

It sounds like it’s the basal setting that needs to be adjusted, I guess. After reading the manual I see that it doesn’t max out at 3 units per hour like I previously thought… I just don’t know how the 35 max per hour is going to work…

the max basal is adjustable up to 35 as you have seen, but adjusting basal rate for meal bolus is not necessary, and could get you in trouble.

minimed factory limited the max single bolus to 25u to keep them from lawsuits. There is nothing stopping her from figuring out her meal bolus (let’s say its 40 units) and then manually bolus for 25 units, when it’s done, manually bolus for 15 more units. there’s her 40 units.

any time she needs a correction, a manual bolus overrides the “bolus wizard” which stops her from “stacking” bolus infusions. (the pump calculates how much insulin is in her, then only will correct for a portion of the high blood sugar)

the bolus wizard is an approximation, and can be affected by many things. I am sure you daughter is also going through a lot and wishing she didn’t have to put up with all of the BS (and I do not mean blood sugar). IMO her insulin resistance is pretty high, she would do better with more regular exercise, more smaller meals and lower total carb intake. If she’s battling depression, the blood sugar control should come second and after she figures out where her head is on this. if it helps at all, I was at war with myself for 30 years over this disease, but I lived, so I guess I “won”.

Insulin is one of, if not the only, medication that has no maximum dose.

But having said that, it’s pretty rare for a young and newly diagnosed person to have the severe insulin resistance that you’re describing. It’s not the pump since your daughter has taken large doses with both shots and the pump. That’s why I mentioned that she might be skipping shots. Something doesn’t add up.

Insulin resistance like what you’re describing is more typical in people who are severely obese, elderly, have double diabetes (type 1 and type 2), pregnant women, people in kidney or liver failure, or those on steroids or other medications that inhibit insulin.

If your daughter does have insulin resistance, she can inject or pump using U-500 insulin instead of the standard U-100 stuff. It’s more concentrated and is only for those who take very large doses. I attend church with a woman who has type 2 and is severely insulin resistant but uses the pump and U-500 with great results.

I’ve never heard of stronger insulin. It’s still so new to both of us and there’s a lot of “new” with every conversation I have about this.
At her appointment yesterday, they suggested trying a different infusion set and not using the location she wore it that time.
Her insulin sensitivity (another new term for us) is 16 to 1. There aren’t any other medications or conditions. I’ve never heard of double diabetes. But T1D is definitely a family trait… Her father and his only sibling were diagnosed as young kids.
It would be really helpful for her and make it a bit easier if she could get 3 days of use on the pump before changing it. I think she’s feeling overwhelmed by all of the work of it and trying to watch carb intake just to get 2 full days between changes makes her feel like all she ever does is reload and reapply, which takes a fair amount of time.

Joe, I’m confused when you said to take 25 then when it’s done take 15 to get 40… The pump won’t let her do that. We are understanding that 35 entered in any combination is all it will give in a 1 hour period of time. That she would have to wait an hour to take that last 15. ???

She’s going to use the sensor again for the next week to figure out if the basal rate needs more tweaking. I mean, at her sensitivity, 2.5 units per hour only brings sugar down by 40. And since her A1C is over 11 (but down from 14 at diagnosis) that’s just not enough.

Also, her build is average. She wears a juniors size 9 and is about 5’6

Everyone’s needs and metabolism are different, but I’ve never heard of such heightened insulin resistance in a young and otherwise healthy person. Is your endo concerned that she needs to take 40 units of rapid acting insulin to cover a meal? Something doesn’t sound right here.

They have never said anything about it being unusually high. Even at this last appointment when they mentioned her sensitivity, they did say that she wasn’t as sensitive as a lot of people, but didn’t seem to wonder why or have any concern about it.

Joe, I’m confused when you said to take 25 then when it’s done take 15 to get 40… The pump won’t let her do that. We are understanding that 35 entered in any combination is all it will give in a 1 hour period of time. That she would have to wait an hour to take that last 15. ???

i don’t mean to contradict, but the pump will, in fact, let you manual bolus for 40 units. you can’t use bolus wizard, you will have to manual bolus or express bolus. you will have to do it twice in a row because of the 25 unit maximum. if you use the “wizard” it will stop you from stacking - in other words - you will have to wait before the pump “lets” you bolus.

don’t be too upset about insulin sensitivity - you need what you need. there is no right or wrong here. I do not find it relevant to determine “averages” - reasons your daughter may need more insulin: anxiety, growth hormones, overactive cortisol and epinephrine, etc. there are drugs that reduce insulin sensitivity but they are not worth the side effects unless you’ve tried everything and she still has poor control.

hang in there!

Thanks! I had no idea there was a way to get around that 35 units cut off. It has never been mentioned by the dr or trainer.
They don’t have any concern for the sensitivity. But also don’t seem to comprehend why she is having trouble with highs all the time with the pump…
I will ask her to read up on the manual bolus option so she can ask about that with the trainer. I think she is going to be meeting with her again soon.

I have the minimed 530G since December. I am only 11 years old. has her Endocronologist given her Syringes for corrections? if not, order some next time you guys have a visit! if her pump wont give corrections, use a syringe and give a correction! I have had to do that a few times and it has worked!

Hope this helps!


Just out of curiosity, what kind of carbs is she consuming? Certain starchy carbs can send glucose levels through the roof, and the flip side is high #'s and doses as you explained. I know white rice is the worst for me. Everyone is a little different, so maybe try to adjust food intake a little. Good Luck.