Lana and SAP – sensor-assisted insulin pump
Lana received DM1 a month before her 4th birthday. There were no medical staff in her kindergarten, and the educators had a problem “taking care” of the child enough, so we had to write off Lana. In September last year, we re-enrolled her, this time in a preschool group. For the first 3 months, as a parent, I was constantly in the immediate vicinity for those 4 hours.
In November, we received a call from CHC (Clinical Hospital Center) Kantrida due to the possible receipt of a 640G insulin pump. We are very pleased with the progress provided by the use of the pump, instead of foams. In addition to the pump, we used Libre Freestyle sensors. Even before the pump, we bought them in a private arrangement for more than a year and a half. Lana used Sony Smartwatch 3 with Libre sensors, which alarmed at lower and higher sugar values, but at that time Lana was not even 6 years old, so it was necessary for me to be present in order to stop the insulin pump, i.e. temporarily interrupt insulin delivery at low sugars. We were soon invited to training on the use of Enlite sensors, which we will also receive at the expense of CHIF.
The Enlite sensor is compatible with the 640G pump. It connects and alarms when the glucose level is higher or lower than desired. Also, at lower values, the pump temporarily stops the delivery of insulin on its own, which means a lot to Lana because she does not recognize the lower values of BG. She feels low sugar levels only at values of 3 mmol / L and below.
We set up the first sensor back in the June for rehearsal and she had both Libre and Enlite at the same time and then I was more satisfied with Libre. He deviated less from the finger measurements, reacted earlier, and Enlite kept showing lower than he should have and for a full 6 days. After 7 days, when it expired, I was unable to extend it because the sensor was removed when removing the transmitter to restart it.
When that first sensor finally started to lose its signal, I wasn’t “clear” how to proceed, but the fact that there are so many satisfied users in the world prompted us to try to switch to using the Enlite sensor. With the next two sensors, which I set up on my own, as we put the Libre, the deviations were better than expected, even smaller than with the Libre, which was again set for 3 days in a row.
For the first day or two on the Enlite sensor, we got used to the possibility of calibration, which the Libre sensor does not have. We learned when was the right time to calibrate and other little details we have not had a chance to get to know before. Of course, at the beginning we were not sure about the value of BG and that we often measured with a glucometer, i.e. controlled the sensor. Given that Lana is already “bigger” (6 years old), she now knows how to react when the pump alerts that the sugar is low or high. At night, the alarms are loud enough that I can hear them from the next room, so I somehow reduced my shifts (true, I still have to get used to it and relax a bit to completely turn off the alarm clock on my cell phone).
For now, we are on the same sensor on the 10th day, the values are accurate and it works great. I hope that it will succeed for at least another day or two without any problems, because in that case the amount of sensors by the CHIF would certainly be sufficient for 3 months, i.e. 90 days (with one reserve sensor). If this accuracy trend continues, we will definitely stay on Enlite because for Libre, in order to have alarms, we used an additional Sony smartwatch and mobile phone that put extra strain on the little one when she was alone (pump, sensor, smartwatch attached to the sensor and mobile phone around the neck).
When we got a little used to the combination of pump and sensor, we were delighted with the alarm that can be adjusted according to user needs. The pump, when necessary, stops the delivery of insulin and restarts it after the pump algorithm calculates that there is no longer a risk of hypoglycaemia. Lana tested her first sensor and pump at the “party”. She was at the inflatable castle all day and jumping. The pump stopped (suspended) itself when the BG fell and started when Lana calmed down a bit. The child was not overwhelmed with food, but physical activity alone in this situation would make it very difficult for us to take care of sugar levels.
Now Lana is attending the 1st grade of elementary school. We introduced the class teacher to the condition and basics of DM1 and the possibilities of an insulin pump. At the beginning, I was also on duty in the school hallway, but soon the class teacher, other teachers and school psychologist were educated by the head nurse at the endocrinology department of CHC Kantrida. My duty was no longer necessary. Teachers now know that Lana needs to be reminded from time to time to check her BG level. They are familiar with the alarm function and suggest to Lana to eat a certain amount of carbohydrates if the sugar value is too low. If the pump reports that the sugar level is falling, but not very abruptly, they know that it is necessary to monitor for some time whether the pump “did the job properly” by stopping the delivery of insulin and whether the sugar level has returned to normal. In case the pump uses a sensor to report a higher sugar level, Lana, in agreement with me, checks the GUK level with a glucometer and takes a correction.
All in all, the Enlite sensor in combination with the 640G pump is our solution for the gradual independence of our child. The blood sugar control results are far better than with our constant vigilance over the baby and she does it all on her own. At the same time, this medical-technological achievement allows her to relax in the game and indulge in childhood and the little things that are important to her. In terms of accuracy, as a rule, (at least in our experience) Enlite is more accurate than Libre because they can calibrate it directly, but it requires calibrations at least 2 times a day (every 12 h). Yes, there are sensors that deviate a little more (more than the average 0.5 mmol / L from the finger), but there is also that with Libre, and, although it is sometimes inaccurate, it is many times better than every little bit of poking in the finger. The biggest advantage over the Libre sensor is that it suspends the pump without additional devices.
What worries me as a parent is that in a year Lana will lose all this. We will lose the possibilities provided by the 640 insulin pump in combination with the Enlite sensor when we turn 8 and we will return to the “Stone Age”. It will be difficult for all of us – to Lana, us parents, teachers, and blood sugar.