How often do you adjust the pump?

Hi everyone,
DS started pumping 3 months ago. I know that fine-tuning can take a long time, but it seems like every time we find a new tendency, something new comes up. His latest thing is being 250-300 before dinner. His lifestyle and eating habits have been the same, but the high numbers just started about a week ago. We are on the phone with Endo pretty much every week with a new problem. Is this a part of initial fine-tuning the pump, or is it always like this with toddlers?

 

I will start with the disclaimer that I didn't manage my daughter's D that young. But, I'm noticing your son's diagnosis date. One thing we experienced and that I've seen repeated over and over and over by posters on this board is that about 5-6 months post diagnosis, the kids begin to need dramatically different amounts of insulin. I'm talking 2-3x as much within a week or two. My gut says that's probably what you're dealing with right now. It doesn't necessarily mean ALL the betas are gone; my daughter still had some c-peptide at 3 years.

Until the last few months, I adjusted the pump almost daily for two years, but we were dealing with a child who was growing far beyond the normal growth curves and in puberty. I can't say I was disappointed when the podiatrist told me 1/2 of the growth plates in her feet had fused, knowing that management would again calm down.

 

My son is 11 and we are changing pumps settings weekly, sometimes daily. Once we have it good for a few days, things change again.

 

We use temp basal a lot, at least every other day, sometimes every day. Might be high or low. Fresh site tonight and running low needing 80% temp basal. She seems too need permanent basal adjustments every 6 weeks or so and I/C ratio adjustments every 4-6 months. I've heard of others that rarely need any changes but my daughter seems to be changing all the time.

 

Thanks for your responses!
Do you run every change by your Endo? When did you start adjusting on your own?

 

Because I have a t:slim pump and I connect to my computer to charge it daily, I end up uploading it daily, as it is quick to upload. I change dosages almost daily.

I can't answer the adjusting dosages on your own question, but the sooner you are capable of doing so, the better. Consider Gary Schiener's "Think Like a Pancreas" and John Walsh's "Pumping Insulin" books.

 

I would say I change the pump settings every couple of weeks - otherwise it's just lots and lots of temporary basals. I changed pump setting on my own about a week or two after getting the pump.

 

I doubt is just initial "pump set up". Its life with diabetes. They are always growing and changing and their insulin patterns will change. I also think that there is a chance you are coming out of honeymoon and that's why you are seeing the higher numbers. At the beginning, until you really understand how the insulin is going to work in your child's system with a pump, basals, etc, then I recommend working with your endo. As you get more experienced, maybe you can "suggest" to your endo what you think the change should be and get their confirmation until you really know what you think. We are 7 years in and for the most part I feel like I can tell whether we need a basal or a I:C change and how to change it, but there are times it helps to have fresh eyes with the Endo and CDE to help see the forest for the trees we live in every day. When we go to Endo appointments, we look over the problem areas and she asks ME what I think we should change and then confirms whether she agrees, etc.

 

Ashleigh is 15. We make pump changes weekly. I just increased some basal rates Sunday night.

 

No i don't run changes by the endo. I started making my own changes 3 months into doing MDI and a month into pumping

 

We were changing pump settings about 3-4 days into the pump. Our endo likes to go very slow in changes and it was obvious it needed MAJOR changes so I started doing it all myself and had it dialed in in a few days versus what would have been a month. Since then I have never ran any changes by the endo. I would start doing small changes as soon as you feel they are needed and take notes and ask questions on this forum. The amount of experience here is staggering! Time and experience will build your confidence and soon enough you will know more about how to treat your child than your endo.

 

Ditto for the most part, except I made an attempt at (read:" the mistake of") being "compliant" for about 3 weeks after pump start during which time our endo and CDE were content to let my daughter run in the 250s to 300s while they made micro change after micro change with at least two days between micro changes to see what the previous micro change did (little to nothing.) One day and several hours of pouring through Pumping Insulin later, I took the pump by the horns and my daughter's BGs improved 100-fold. While I respect our endo and CDE a great deal, I don't think I'll ever return to consulting them about pump settings, which insulin to use, etc. IMO, (unless they or their children have T1D), the most educated and experienced endos and CDEs in the world can't hold a candle to the parents on this Forum. Our diabetes team did an admirable job of holding our hands, calming our fears, and teaching us the basics after diagnosis, but everything past that I learned right here and in Think Like a Pancreas and Pumping Insulin.

Regarding how often we make pump adjustments, I'd say once to a few times a day. This is probably more often than most parents, but my daughter is 12, recently had the majority of her beta cells sing their swan song, grew practically a foot, recently changed insulin type, and is busy pubertizing. And I actually enjoy the challenge of micro-tweaking to improve her numbers.

 

Making changes all the time!!!!! You are not alone, and just when we think we have it all figured out, it changes in a week. If we're lucky to make it a week lol. Little ones and type 1 ugh!!!!!

 

Same here. Every question or a tiny change takes a day or two. I understand that they are busy and can't go through every single pump change immediately, but my son was still running 200-300s. So I took the pump and made a few changes that I think should be done. Soooo much better now.
p.s. do you think changing I:C from 1:45 to 1:43 is a micro-change?

 

My CDE and her teamm are great about getting back to me quickly and evaluating Dex and t:slim reports, and I generally agree with their suggestions. However, they suggest very small changes, which makes sense intuitively but means that my son has been spending hours over 200 (and some time over 300) every day for a few weeks now, which I am not happy about! I believe his honeymoon is ending and/or he's going through a growth spurt, so I want to be proactive. I am getting ready to call tomorrow after having made changes on Tuesday morning but would love to run some ideas by you all.

1) L, like most kids, needs more insulin in the morning. We upped his basal by .3 over six hours (.1 to .15 per hour from 6 am to noon) and that helped but he's still going very high and staying pretty high through lunch. His lunch bolus includes a correction and by the time I pick him up from school he's back in the normal range. So, given that he stays high I think that's a carb ratio issue, right? NB we are giving 2-3 eggs and/or sausage with breakfast for protein and pre-bolusing by 15 minutes so I don't think it's the meals themselves.

2) If he goes low in the afternoon and it's been more than 3 hours since a snack, I should reduce his basal before dinner, right? I need to look at the reports carefully; I might be able to solve this by changing his carb ratios for snacks.

3) Since his target is 140 for bed and 120 during the day, if he's under 140 at dinner I should essential reverse correct by giving him some dinner carbs uncovered.

4) At about 9-10 pm he goes through the roof. I should look at the average corrections I have given him at my bedtime, around 10-11pm and spread that out over several hours as a basal increase?

5) Nighttime corrections are now only bringing him to 180 and leveling off so the correction factor also needs to be changed at night and/or I need to reflect that in the basal changes in #4.

Advice appreciated! TIA!

 

Not on a pump but DS's ratio in the morning for breakfast is 7 to 1. The ratio for the rest of the day is 10 to 1. So yeah changing the ratio for breakfast did the trick for us., and that represented a fairly significant increase compared to the rest of the day. Before the change he would rocket into the 200's and stubbornly stick there. Now he stays less than 180 and gets back into the low to mid 100's by lunch.

 

My daughter's ratio is 1:7 and breakfast and 1:10 at lunch too. We are actually looking at a change because we think the 1:7 was masking a basal problem but we'll find out tomorrow when I give her breakfast after a massive basal change.

 

When you are using only fast acting it is often very hard to see the trees in the forest or basal/bolus needs. I would agree that the 1:7 is pretty aggressive and that it it is most likely covering up a basal shortage.

 

I make changes daily. We did a year of MDI where I spent the first 3 months running all changes by our clinic team. I realized from that experience that they know my child way less than I do and never run changes by them anymore.

 

Making changes... every couple of days I'd say. And I agree with what others said. I have just accepted it as a way of life - constantly reviewing the numbers, looking for trends and making changes. I only have the team help if I'm not sure what to do. Otherwise I do it myself... but, I am CDE and did this for a living for years.... So you have to do what you are comfortable wtih