The constant pump adjustments are killing me!

I’m wondering how often others change their child’s pump settings. I am being driven crazy by the constant changes. My daughter is almost 11. For 3 weeks recently, her settings weren’t covering her needs, and she was running high day after day. I kept adjusting upwards. After 3 weeks of this struggle, she suddenly plunged to between 60 and 90 everytime we checked. I turned her pump down, down, down. The last two days, suddenly back up in the 150 and above range. Arg! Does this struggle sound familiar to anyone else?

At 11, I would say she hit a growth spurt. With my son, we find that he runs inexplicably high for several weeks than drops down to normal range. If we have adjusted up for the highs then her runs low when he stops needing so much insulin. We also see this with illness, only after illnesses, he runs dangerously low for a day or two and we never quite know when that is going to hit.

Hang in there!

Puberty??? It just might be the answer. Fluctuating hormones might very well be the reason…sigh.

We aren’t on the pump, but we do our own insulin adjustments for both our girls. Our younger one is the one that is hard to manage. she is 7, but she has no natural insulin so her numbers can really bounce.Anything from growth spurts to stress to excitement to hormones can affect her levels. there are times where it seems like we are doing adjustments almost daily with her. Same thing, she climbs and climbs, and we adjust her basal up, then boom one day she plummets, and we are back to our previous doses. Have you measured her height? one especially bad month we found at the end she had grown a full inch, so at least we knew why. It can be very stressful though i will agree!

Just today our endo reminded us that puberty plays havoc with the numbers, and our highs (mostly at night) are norm and not to worry too much-mostly that we have to worry about the lows that we are getting. We tweaked her sensitivity at dinner (just before the lows we were getting at bedtime) to see how that helps. She actually told us that we shouldn’t be changing it a lot, that we have to work patiently at watching it to see what works to get the basal level right without having to do correction boluses. She said be to keep her on the proper amount of carbs (which with puberty involved is much higher than I thought) and to be patient with it all , Patient is hard!

I could have written exactly what you just wrote - although my son is 10, not 11. I just was complaining to my husband about it - I think it’s just part of the roller coaster we will ride for the next - well I don’t want to guess, but from what I’ve heard the entire puberty time is pretty crazy. : (

It could be your daughter might start mestrating soon. Track these highs. Are they happening 10 days apart on a 28 day cycle? I have to raise my daughter’s(12yrs) basal when she mestrating because her BG are high during that time and also ten days prior.

All I can say to that is I Hope Not! : )

Yes it does. Unfortunately, I think this is the norm for children in the pubertal and teen years. It has been the norm for us since about 7 months after diagnosis and she was not in puberty, only eight, but our diabetes team did not prepare us for how frequent these changes are. We were told to keep the written logs, circle all high numbers in red and low numbers in blue and adjust basals two hours prior to each high if we noticed a three day pattern. By the time we noticed a three day pattern and adjusted, we had to adjust back down again. Even in the beginning, we were adjusting her pump every three days. We adjust the basals immediately for lows if we have determined it is not bolus related. So the first year and a half since dx were extremely difficult. Then, hopefully, you start to notice your child does have a daily pattern, as well as a more long term pattern. Some children do not have patterns of any kind. In our case the daily pattern is great numbers from the hours of 7am through 4pm (once you have figured out the basal and ICRs for breakfast and lunch), rising until hours of 6pm through midnight where we have a very steep increase in basals until she comes back to baseline the same evening any time between 11pm to 1:30 am in the absense of a growth spurt. The 11pm through 1:30 am time period is unstable every night and I watch the basals hourly. This may be food related. As a child, she had a decrease in insulin from the hours of 1:30am until 7am. As a teen her pattern has switched and she needs more insulin 3am thru 11 am. Growth spurts are obvious during the evening hours from 6pm onwards, when she needs a two to three-fold increase in insulin until the numbers come back to baseline (usually by 3:30am latest). And this is in addition to her normal high basals, where she gets double the amount of insulin she needs during the day from 6pm to 11pm. You have to stay up to monitor the growth spurt as this is a dangerous increase in the amount of basal increase given. Now there ARE still increases and decreases in basals during the “good” 7am thru 4pm period, but they are minor. I call it “tweaking”, meaning you are gently increasing/decreasing basals during this time period based on the lunch and before bus numbers. The nightly adjustments from 6 or 7 pm through midnight have always been much more dramatic. You need to keep written logs, need to watch over time. I am hoping you find a pattern of sorts. If there is no pattern cgms is mandatory, I feel. P.S. Long term patterns… for us, once her numbers have about a two day pattern of being really good, she starts to trend low, needing less insulin. So we watch for lows and decreases when she is having a really good run. Walsh mentions this in his book “Pumping Insulin” and he gives lots of examples of patterns that are common… bicycle pattern, etc.

My daughter is 15. We have just gone through the exact same thing! It is exhausting. I think we are almost leveled out again. In the four years since she was diagnosed we have only been through this a couple times. It is good to know that others are in the same boat!

Yes, although I think our D’s pattern is a very common one, another child/teen could have a completely different pattern. Walsh’s book covers a lot of the more common ones. Worse, there are children/teens who don’t adhere to any pattern, BS much more variable. So thank God for cgms, which is the only thing that would help in that instance.

My son is now 11. Exactly the same story since he was diagnosed, when he was 8. I wake up usually three times per night, since his basal variability is concentrated from 6 pm to 5 am.

My daughter started on the pump in August and I feel like we are just getting the number in range now. The pump rep told me that they always try to keep them high at the beginning because they are so terrified of lows. It ended up that her ISF was set too high (160 and should have been 100) and when the endo saw that she said, hmmm…that’s too high. Thanks pump rep (Animas PING). Prior to adjusting that ISF, I was playing with all the other settings, trying to find a balance. Now things are pretty good. Hate to say it but on shots we had incredible numbers. Pump not so much, but my daughter loves it and the freedom of eating whenever is excellent!

Oh that’s miserable. I hope you don’t have a job, too.