Too shaky to get out of bed.

That’s what my son said to me this morning when I went to wake him up for school. “Mama,” he whispered, “I’m too shaky to get out of bed.” So I ran. I ran to grab his meter and glucose drink all in one swoop. Tested. 41. FORTY ONE!!! Of course he was too shaky to get out of bed, he was about to pass out. For new readers (thank you new readers for joining us) 41 is way way too low. It means there is too much insulin coursing through his body causing the blood glucose to drop dangerously low.

While this appears to be a post about lows, it’s not. It’s a post about endocrinologist and expert recommended settings for my son’s insulin dosage. There is a setting in my son’s pump called ISF that stands for Insulin Sensitivity Factor. In simpler terms it means how much insulin is needed to drop my son’s sugar a certain amount. Some people’s ISF is set at 1:200 meaning that 1 unit of insulin should drop them 200 points. If they are using an insulin pump and they plug in a blood glucose of 350 and their target is 150 the pump will subtract 150 from 350 and get 200 and then using the ISF setting of 1:200 the pump will tell you to administer 1 unit to drop those extra 200 points. Using a pump is helpful because it can do the math for you. If this same person only needs to drop 100 points the pump will tell you to give only 1/2 unit.

These ISF settings are not pulled out of the air, they are recommended by the endo or experts based on the person’s Total Daily Dose of insulin or TDD. Experts use the 1500, 1800, and sometimes the 2000 rule that was created by even more expert endos to determine what ISF you should be using. My son’s ISF is supposed to be set at 1:90 according to the amount of insulin he uses during the day. The problem is is that my son’s body did not read the same material that our endo studied, or the other experts, and when we use an ISF of 1:90 while he is sleeping he drops like a brick.

Yes, as the main caregiver of my son and his diabetes I do have the ability to change the ISF to whatever I wish. In fact, my son’s ISF for the middle of the night is 1:105 and that still dropped him like a brick last night. I have already changed the ISF to be 1:120 for tonight in case I need to make another correction.

But herein lies the problem. I am not the trained endocrinologist. I am a mom. I can only make my changes based on what I ‘think’ my son needs. I have no research study to back my decision. Once I veer away from the settings that our endo recommends it becomes an issue of “Swim at your own risk,” or rather “Make changes at your own risk.” Every change I make that moves farther and farther away from what my endo says moves me farther and farther away from the only hope of support that I have. And quite honestly I desperately wish that I didn’t have to veer from the recommended settings. I wish that my son’s diabetes was textbook so that we didn’t have any unexplained lows or highs. I wish my son’s diabetes came with a handbook, but it didn’t.

Once I move from where the endo recommends I am then put in a position of defending my choices, which is not a good feeling when your only reason for changing is gut instinct. It’s hard when your kids buck any system, and it’s even harder when they buck the diabetes system because you are travelling on uncharted territory when you make changes, but the wrong change could be disastrous…for your child…your baby…the love of your life.

It’s good that we have experts in the field to guide us along, it’s not good that some people still pretend that diabetes care is written in stone. Unfortunately much of taking care of person with Type 1 diabetes is trial and error. I am not an expert, but I am a mom whom will do whatever it takes to keep my son safe, even if he doesn’t fall in the ‘recommended settings’ realm.