Feeling frustrated with pump

My 2 year old son Rory, has been using the pump since mid-December and I feel like we still don’t have him any where near better control. It has been challenging trying to test his basals and it seems like I can never get consistent results to know it is set correctly. I feel like I am constantly making changes. Shouldn’t I get to a point where I can leave the setting alone…for a while anyway? The Dr.s and nurses tell us he needs to be balanced with 50/50 basal/bolus for his total insulin, so that is what I am working towards. Sometimes I wonder if it is the site, we change it on time, at least every 3 days, sometimes 2 if things just don’t seem to be working right. Occassionally I will see air in line the next day and have to clear it, I am sure this causes some of the issues and I am wondering how to avoid this. I always check the line after priming with set change and it always looks good at that time. Just wondering how long it took others to get better control and consistent results with the pump. We hope to try the CGM for a 3 day session at his next appointment and maybe that will help to finally get his settings correct.

Hi, Natalie,
Our Endo told us to change the site every 2 days, not three. I don’t know how to clear the air in the line once I’ve inserted the pump. Can you advise me on that? I know how to prime it before I insert, but not after…Also, I’ve noticed that if we wind the tubing too tight, the tubing doesn’t look so good, so we usually wind it 3 times before clipping on the belt. Our Endo always tells us she only wants to change one setting at a time and then leave it to see how it goes. (rather than changing sensitivity & basal, etc. all at once.) We usually leave a change for several days and adjust as needed.
I hope the CGM will help Rory. Send your family our greetings. Jessica

I guess we should just start making a routine of every 2 days also. Our Endo advised us to only use his bottom, and I know you had mentioned before using Elisabeth’s belly and thighs. I am not sure why they are so set on us just using his bottom right now. I try to move the sites around as best as I can but I wonder if some of the areas are just getting used to much also. Right now we have just been putting his pump in a pocket sewn on the back of his t-shirts. We loop the tubing up under his shirt and kind of loop it in the pocket. Sometimes we have to watch though because it can get pulled to taut. As of now I have pretty much just been adjusting his basal rates to try and bring the dose up to closer to 50% of his daily total. I try to do like you said, make a change and then wait a few days to see if it was enough. Yesterday I had bumped his morning basal rate up. His sensitivity seems to be alright, based on the times I give him a correction and then don’t feed him right away to make sure it brings him down appropriately. As far as clearing the line of air, this is what I do: I ususally check it while he is taking his bath while he is disconnected from it, (and I try to check before bed and just disconnect briefly if I see any there.) I just do a fixed prime, I increase the fixed prime as high as it will go and just let it run through. It goes pretty slow but I figured this way it wouldn’t interfere with it registering a bolus that wasn’t really given and then counting it as active insulin later, you know what I mean? Then I just make sure when it is done to set the fixed prime amount back to its usual setting for the next site change. So Elisabeth doesn’t bother it with it clipped on the belt? I am just worried Rory will mess with it too much if it is eaiser to get to. Just now he was 320 at lunch, but I just gave him the correction and will check again in an hour to make sure it is working and then do lunch. I just changed the site this morning after breakfast. This is what screws up our day. I have to delay his lunch a little bit and then he never gets a nap before I have to pick my older daughter up from school. Then the rest of the day his is bonkers. And he gets like that when he is high too, so I end up doing extra checks to determine if he is high or is he just tired. At least my 8 1/2 month old is napping!

Have the Docs suggest an OmiPod??

No they haven’t. Is that what you use with your daughter? How old is your daughter? I just looked up the info about it online and it does sound like a very nice system. The device looks kind of big for a toddler, though. How big is it? That might be why they haven’t suggested it and it may be that this office uses more products of a particular company. But it is something I can bring up at his next appointment. I like the idea of there not being any tubing to worry about. How have you liked it?

Hi Natalie, we had the first 2 weeks intense trying to figure out what he needs for basals, bolus… He had to eat a fixed amount of carbs for those 2 weeks, staying away from fatty, fried or high-protein foods. The hospital established the basal rates and meal ratios and we had to test them during those 2 weeks and report back to the hospital with the changes we made… On top of trying to figure out what he needs, to try and achieve a 50/50 balance must be really hard, I can’t imagine! Even after the first 2 weeks, we were still having problems and sometimes the fear of giving too much sometimes doesn’t help also.

The thing is, there are so many things that can have an affect on his BG levels… For us, just an example, on the weekend mornings, we have to give him more carb/insulin ratio and that affects his morning basal rates. Since his bolus is huge, 2 hours after breakfast we have to bring his basal rates way down otherwise, he’s going to crash rapidly. The bigger the bolus, the bigger the effect. But take that big bolus out, there is no way that that basal rate is alright, he would need more basal insulin (if he didn’t eat breakfast let’s say).

I don’t know if it’s just me, but I have found that everything is intertwined and one small basal rate change we will make will affect some other part of the day.If we’re having problems with the night (repeated highs), but otherwise during the day, his basal rates are great. We put up the night basal rates, well, he’s going to drop during the night if we don’t lower it down somewhere. So the balance, for us, is hard to find also.

The number of days we let the site in sometimes affect his BG levels, some other times, it doesn’t. We use angled infusion sets and the see-through window isn’t airtight, so infection sets in after 2 days. We cover it up with an IV3000 or Tegaderm, and sometimes we can stretch it to 3 days, but other times, we have to change every 2 1/2 days. We tried a straight-in one (9mm cannula) and it lasted 3 days no problem (it’s airtight).

What he eats plays a roll, and how much also. On nights he barely eats, we have to reduce his nighttime basal rates, like they are perfect for his “usual-sized” meal. For us, we haven’t found the perfect recipe, but found something that works and don’t bother much with the 50/50 balance (they say it varies from people to people, some it’s 40/60 others 60/40). They told us to make changes when there is a pattern of corrections needed.

So it’s okay to feel frustrated! You are not alone :wink: The CGM would be a great thing for Rory to help you figure things out (Reminder to self, ask endo at our next visit about CGMS, went today and forgot :frowning: I knew I was forgetting something).

You’re doing a great job Natalie! We’re here for you! – Gina

OH my, how overwhelming!!! When you see air bubbles in the line, I just disconnect, rewind and prime again to get the bubbles out. I still struggle with the bubbles, even though I keep tapping the vial to get rid of them. If you put the pump upside down the bubbles go to the bottom rather than sitting at the top of the vial. .I might ask your nurse to review all of your basals and ratios. Toddlers are so hard because they are changing and growing so quickly, and are so inconsistent with what they eat or like !!! It sounds like you are doing a great job - you have your hands full. Keep up the great work. Nancy
I have seen the Omnipod - It is rather large - I cannot imagine where you could keep it on a toddler. It is really
bulky!!! THere are many that like it, but when I saw it, I found it very large and too cumbersome for my son.

There is a book that is an absolute God-send “Type 1 Diabetes” by Ragnar Hanas. Dr. Hanas is a pediatric endo. and his book is the first I turn to. All insulin regimes are explained; all ages and what to expect, basal testing without fasting, as well as fasting basal testing; an alternate way to adjust basals when you can’t basal test, etc. In it he clarifies basal/bolus balance. Young children do not always have to have a 50/50 basal/bolus balance. My niece had fantastic control for years (A1c-wise) with a basal of about 35 to 38 percent, the rest being bolus. Can you test his basals by time period, starting with four hours after dinner? Your son’s pattern will be revealed and his individual basal need as well. Unfortunately, basals can and do change frequently but that’s another problem. There are tips in the book for tweaking between basal testing. Forcing a basal pattern on a young child, in our case, a 50/50 would have been very dangerous. Now she is on a 60 basal/40 bolus but she is almost a teen. If you can get the cgms, that will help immensely. If you can’t, ask the endo for the blind cgms that the endo prescribes (child wears it, endo takes it and looks at the three day data). I think it must be incredibly difficult adjusting basals on a two year old, they are growing faster than they will at any other time in life. At least with the pump, he does not have to have all those shots. CGMS will reveal what needs to be done, don’t worry :slight_smile:

Thanks to all of you. Things have been better over the last week or so. His balance is more around 40/60 and it seems to be working better. I know initially he was really off balance with 20/80. It would be nice to figure out his basals without having to hold his meals. I will have to look for that book. Breakfast is really the only easy one to test, and through the night obviously. During the night is when we were always still seeing high 200s into 300s consistently. Lately it has been a nice change of pace to see 150s-160s and then see him stay in that range through the night. And it may just be me but it seems like whenever I put the site in his left side he has better numbers compared to when it is on his right side. Weird I know, but maybe it is because I am lefthanded and I am getting it placed better when I have to put it in that side. Only one more month and we can try the CGMs :slight_smile: Which reminds me I better email his nurse to remind her that we wanted to do that at his next appoinment.