Super high highs and insulin before meals


(Flora) #1

My daughter (3.5 years old) has started having highs of over 400 after eating. Her dexcom is just reading “high” currently. This began Tuesday when she was at preschool and I had never seen it before and freaked out a bit. The school nurse took her BG and she was 434. By lunchtime she was 71 with no correction.
It’s clear to us, and her DNE is in support, that we need to give her insulin before she eats or at least during. We weren’t taught this way and are only 3 months in so I am nervous, but I understand most people with diabetes take insulin before meals, right?


(Dassy) #2

Hi Flora,
I’m relatively new to this, only about 5 1/2 months. But I was told to take my insulin before each meal, according to what my blood glucose is. The doctor gave me a scale to follow. I also take a long acting insulin every night.


(Dennis J. Dacey, pwD) #3

Hi Flora @Fiora, I agree that you, and her DNE should be concerned. But as I’m not a medical doctor and I’m not really familiar with your daughter’s insulin and meal plan I will not second guess.

I will offer a suggestion: work with her doctor and DNE to develop a “correction sensitivity factor” [among other things] so that in the future she doesn’t dive too low - I’m conservative when making corrections having learned the hard way. I validate my correction factor for different times of day by taking one unit of insulin when my BG is at least 150 mg/dl and then doing a BG check [in addition to my CGM reading] after 2, 3 and four hours and again after six hours. I will do this on days of “normal” activities. I suspect that your daughter could be in the so-called “honeymoon period” which could also cause her BG to drop fast.


(Flora) #4

@Dennis, I was hoping you would answer.
My daughter, her name is Willa, is very sensitive to both food and insulin. We usually only give insulin at meals, and correct at that time. When she was at 434 and then 71 there was no correction.
I talked to her DNE for an hour that day, we decided to stop her Lantus altogether, which they had been recommending for a while. The change in no Lantus hasn’t been significant, except for overnight, she hasn’t been dropping and needing snacks at midnight and 5am.


(Flora) #5

We actually just corrected for the first time ever, and at night, which is so frowned upon with our endo, but she is still over 400 from dinner. She doesn’t have ketones, looks like she needs a new ratio for dinner.


(Dennis J. Dacey, pwD) #6

Hi Flora, I hope that Willa has not continued her wild BG swings - I’ve not been able to respond sooner.
The wild swings, in the opinion of some ‘experts’ can cause more than a constant high - although not as high as her 434. I too think stopping the Lantus and restricting insulin to fast or rapid acting to cover meals might be safer; as she gets older and her diabetes matures - when she is beyond honeymoon - the Lantus could be resumed carefully and dose[s] timed to avoid her meal-time bolus.
I also hope that you will soon be able to “relax” and trust her Dex to let you know when to step in. Speak with her DNE about a safe target range for CGM alerts - the Dexcom default 70 to 180 may not be right for a child.


(Flora) #7

Yes, we are doing exactly that. Her nighttime numbers can’t really handle any amount of Lantus and we have adjusted all her ratios to support her better during the day. Her over 450 highs were a result of coming out of a recent honeymoon. We have started giving insulin before or at the beginning of some meals, and waiting until after if the meal has high fat content, to better match the time she spikes to the insulin kicking in. Friday night her dexcom just read “High” for hours despite 2 half unit corrections about an hour and a half apart. On a positive note I now feel comfortable as to when to give corrections.
We do trust her dexcom, but her pediatric endo office wants a BG number anytime insulin is given, they are conservative with children and I appreciate that. Your advice is consistent with theirs, we have our high alert set to 350, and the low to 70. It was 3 months yesterday that Willa was diagnosed, and in going over her dexcom reports with her DNE she said she wouldn’t have done anything differently, which is reassuring/affirming. What a crazy education this has been. This forum is so helpful, with so many like you who have had T1D for decades. Thanks for being there!


(Dennis J. Dacey, pwD) #8

You are doing well - the very best any mother [or anyone who care] could do. I admire how far you have come, and how much you have learned in just three months.
A few years ago my wife, we are in our 53rd year and I had diabetes for when we met] “convinced” me to realize that TypeOne can never be controlled, that I have some real crazy days BG wise that are NOT my fault or mismanagement, but that I generally have good management skills.
I think what she really means is that when I see my glucose levels out of range, low or high, that I take proper steps to get matters back in line. You Flora, are at that point very early with Willa. I expect that Willa will with time, with your encouragement, be managing her diabetes like a professional.


(Dawn) #9

Hi Flora -
When my daughter was diagnosed a little over a year ago at 5 years old, our endo suggested we dose for meals after we ate ONLY because our daughter was an extremely picky eater and we never knew what she would actually eat at any given meal. So they wanted us to calculate what was on the plate and then assess how much was consumed, then dose. We learned very fast that our very slow eater wasn’t getting insulin for almost an hour after she started some meals, which was causing huge swings also. It was definitely a learning curve - and would be difficult with a younger child… but start simple. If breakfasts are relatively consistent each day - we did a scrambled egg and a serving of cereal with a half cup of milk - we knew that she would take 3 units of insulin for that meal and we were able to dose for that ahead of time. We actually met her bedside to wake her for school with insulin in hand. I would dose her, have her use the RR and get dressed, and then she would eat. Having success with one meal of the day gave us confidence and hope. We began working with her to get her to ‘commit’ to a plate of food. She would look at it, tell us what she would eat, and then we would dose her before the meal. Again, confidence was building and we were pleased with the smaller post-meal spike. Now, a year later, we are able to get her meal insulin sometimes 20-30 minutes before she eats (depending on her pre-meal blood sugar and how quickly some of the carbs for that meal might hit). A highly recommended reading/methodology is Sugar Surfing by Dr. Stephen Ponder. If she’s newly diagnosed, you can get a free e-book from their website. If not, it’s a $30 ‘worth-ever-penny’ investment.

Prayers for you and your little one. This is not an easy road, but please know that we are all here to help and we’re rooting for your success and her health.

God Bless!


(jjmnav) #10

33 years ago laying in the hospital I was told the need to take my rapid insulin (at that time Humulin Regular) before any meal. Have done so 99.9% of the time ever since.


(ksannie) #11

You should be able to narrow the range after awhile so that the high alert is closer to 200.

Also, an insulin pump might help. When on Lantus, you have to eat to match the action of the Lantus. But on a pump, you can set it lower at night, and avoid having to eat a bedtime or nighttime snack. Also on a pump, you can give a small amount of insulin at the start of a meal and then add more if she ends up eating more than you thought she would. Since it is not a whole new injection, it is really simple to do!


(Flora) #12

Thank you for the book recommendation! We will absolutely check it out! I expect it will get easier as she gets older, the eating part at least. She’s young and what she eats is sometimes hard to predict. We have started giving insulin before meals and been able to eat up to it, which has helped control the over 300 spikes.


(Flora) #13

100% agree. We are appealing an insurance denial currently for a tslim- she may have to wait a couple of years until she is 6 to be approved. I’m not crazy about the idea of attaching another “thing” to her, but it really seems a pump will give us much more freedom and (hopefully) control.