My 4 year old was diagnosed a year ago and he switched to the pump AUG 24/2010. We just went to disneyland and I could never have gone without the pump.
It is really tough switching to the pump and I wrote about the frustrations on my Facebook Group “Canadian Diabetes Type I” under the discussion, to pump or not to pump.
I had been told it is a 3 month HUGE learning curve. We are at 10 weeks and the kinks are still not ironed out.
His Dawn Phenomenon continues to mystify me as it is not consistant. How can he be “7” at 6am and then go to “15” at 8am? Then the next morning he will be fine? (Sorry, I have Canadian numbers and don’t know how to convert)
Also, I have to figure out two different programs altogether for basal and insulin to carb ratios because Payton is SUPER sensitive to insulin with a brand new site and SUPER resistant to insulin when the site is nearing 48 hours old. I am currently making a DAY 1 program and DAY 2 program.
Payton is so resistant to insulin in the morning that when he was on needles, he would almost have the same amount of short acting insulin as long acting insulin. Now that he has the pump, I see that his insulin to carb (I:C) ratio is 1:18 and his I:C ratio at night is 1:25.
Finding out all of these numbers to put into the pump is super frustrating. In the beginning, the first month things were looking pretty good. But then the progress stopped when we couldn’t fix the nighttime highs. We found out the peanut butter at bedtime snack we always gave him to carry him over the night without a low is now a NO NO. No more peanut butter at night because then you get into combo boluses and what not. Turns out the peanut butter affects the blood way past what your insulin can handle in the 4 hours.
Also, once I gave him JUST lasagna for lunch. That is a NO NO. He hit 20. If all of his food is digested in the very same way at the same time, the pump won’t help at all because ALL of the insulin peaks at the same time (unless you are an expert from the beginning and know to do the combo boluses for his body). There is no long acting insulin peaking at a different time to help with the high. SO if you don’t add yogurt and an orange in to vary when the food is digested, then you are out of luck.
I learned the combo boluses several weeks back but they don’t focus on that in the beginning so avoid high fat food until they teach you that. I am assuming you are going to have a team helping you learn the pump but I am not sure what support you have.
I was put on a strict meal plan with a certain number of carbs to stick to with no morning and afternoon snack for over a month so the food would be completely digested and they could see if he could go for 2 hours without going low (to figure out the daytime basal). Payton was SOOOO hungry. I had sugar free jello and meat and cheese for him. It was tough.
The infusion sets that he was using have a larger caliper than the needles he was on so those were no fun either. I switched right away to an infusion set that had the same caliper. I have the Animas pump so instead of Animas sets I bought Orbit micros which have a very tiny needle. Before these he would cry during the site changes and would be moody for hours. For 3 weeks now I have just been sneaking into his room and changing them at night. His bottom flinches and he is a litte bit awake but too tired to complain about it much. It has gotten to the point now that sometimes he doesn’t even wake up. What a relief. He used to wake up for an entire year at night when I poked his finger.
Payton is going to playschool again this year but this time I have to sit outside his door for the entire time. Last year I could just tell the teachers to make sure he ate all of his snack. This time I have to be there the entire time because his pump is unpredictable. Too bad we had to start the pump at the start of school instead of during the summer. It will be nice when his numbers are predictable again. The preschool teacher’s son’s friend was Type I and the friend used to sleep over so the teacher is used to poking fingers and watching for lows so eventually I will get my freedom back.
So far the pump tube disconnected itself TWO TIMES!. He hit 34! He was 36 when he was diagnosed. That was terrible. During this past Halloween 2010 we were at Disneyland trick or treating and it was loud so we didn’t hear the alarm to state there was a bubble in the tube and the pump had stopped. Yikes! The last time I had checked his pump was 1.5 hours earlier.
Okay, so that is mostly all of the bad stuff that no one tells you.
On the flip side, Disneyland with Diabetes was a breeze because he ate what he wanted as long as there was a variety. I got into trouble when he ate half a mickey soft pretzel at 50carbs but what is cool is that you can correct at any time. If you guessed the carbs wrong when you eat out, you can correct an hour later because your blood is not supposed to go up more than 3 points (or so) when you eat and the pump will tell you how much insulin you need to give to fix the current number.
I just could not even imagine the freedom that I actually have now. Technically, he should be able to be fine if he didn’t eat for a whole 7 hours because the basal insulin would match what the liver spits out. Of course the kid would be hungry but medically, he would be fine. So weird.
I do not like needles because the long acting insulin peaks at different times depending on where the site is, how much exercise that area of your body gets, how deep the needle went, if you used that spot for insulin before. etc. How can a person get any control that way.
With the pump you can get super control. It takes some investigation work though. It is like a game. Sometimes you figure it out, sometimes its trial and error learning to apply next time.
The hospital make me poke him at Midnight and 3am. I have not slept through the night yet but I am sure looking forward to it when this “second day site / Dawn Phenomenon” thing is worked out.
Having the pump is the closest thing to normal we have felt in a long time. Reminded me of first diagnosis though with all of the emotions you get. You are going to love it… when the learning curve is over. LOL!