People with Type 1 diabetes make changes to their insulin amounts as their needs change. You only get one chance a day to make a specific change and then you wait a full 24 hours to get to that ‘time’ again to see if the change worked. You can hear the tick tock of the clock as you wait.
Many people with Type 1 diabetes adjust their insulin needs as they see a pattern of higher or lower numbers over a course of a few days. For instance, if a person with Type 1 diabetes checks their sugar before lunch they will take note of the number. They hope for a number in range, which means their insulin dosage is matching their insulin needs. If that number appears too high for two or three days, the person will look to make an insulin dosage change to something before that meal.
They may need to change their basal rate (background insulin), their bolus ratio (insulin they get for each carb), or their correction factor (insulin they get for a high number). That’s where the change and wait pattern comes in. The waiting pattern can look something like this after the person has decided to make a change:
Day One: Change the breakfast ratio from 1 unit for every 20 carbs (1:20) to 1:18, check sugar before lunch, still to high.
Day Two: Change the breakfast ratio from 1:18 to 1:16, check sugar before lunch, still high, but very close to range.
Day Three: Change the breakfast ratio from 1:16 to 1:14, check sugar before lunch, too low number, well below range.
Day Four: Change breakfast ratio back to 1:16, increase the correction factor (ISF), check before lunch, high again, but close.
Day Five: Keep breakfast ratio at 1:16, return ISF back to original, increase basal 2 hours before lunch, check before lunch, high but in range.
Day Six: Keep the breakfast ratio at 1:16, maintain ISF, increase basal 2 hours before lunch, check before lunch, PERFECT!
SIX DAYS to get to a perfect number before lunch. That’s six separate times that you have to wait 24 hours between each change to test at the exact same time the following day to see how the change worked out. This is a very stressful waiting period especially when the numbers are really out of range.
My son was in range for 5 months after breakfast. He calls from school every day to tell me what his number is 2 hours after his breakfast bolus. For 5 months we were on a roll. Numbers were in range, my son was feeling great. For the last 2 weeks, his 2 hour number has been high. I have been making changes every single day for 2 weeks. Some of the changes did NOTHING, but I can’t do anything about it until the following day. Finally today I saw a reprieve and his numbers are ever so slightly coming down. We are no where near in range at this time of day, but I see a light at the end of this tunnel. The hard part is I cannot get too overzealous and make an extraordinary change, I must go step by step to avoid a serious low from too much insulin.
This is one of the hardest parts of being an external pancreas for my son. I have no idea what change is going to work. I have to methodically tick off change after change, and hopefully by using my knowledge I will eventually hit upon the change that works.
It is easy to see why Type 1 diabetes can become all consuming, we have no choice. We are not allowed to forget about it for even a minute, especially when we are working on changes. Time is too precious when making changes and forgetting about it won’t help anyone.