Suger roller coaster with T1D infant - when will it end?

HI all ,

My doughter is a new (~1m) T1D 1.9y's old & her BG levels are all over the place (60<->400) .

she gets 4 shots of insulin mixing NPH & actrapid to cover the day & we changed insulin levels about a zillion time already with our endo , but still its all over the place .

every bit she takes can raise BG of +200 & the next day its -100 ...

now with the navigator 2 CGM at least we can really see how much it changes& boy does it change ..

Did any of you encountered this with infants ?

we're considering a pump ( any recommendations? ) , will it help?

So 1.9 would mean 22 months? My son had just turned one when he was diagnosed. I remember treating lows with just one carb. Since they are smaller obviously little things have a bigger effect on bg. You just have to find what works, and know that diabetes can always be unpredictable. Also depends on your honeymoon period. My son was caught by accident early and he honeymooned for a year and a half. after that was over things were a little more predictable.

One thing that helped my son, after he got on solid foods, was yogurt. It keeps his bg much more steady.

A pump is key to fine tuning the tiny doses needed for little ones, if you can do it. Glad you have a cgm, that's great. When we were first diagnosed, we used lantus for long acting which I though was more steady than nph. We have used humalog and novolog for fast acting. You can look up online what those are called outside of the USA. However, people use all sorts of insulins based on their specific circumstances.

You might want to try some Facebook groups for support too. They help when you are frustrated and need a quick bit of support.

Hi Avi -
When my son was young (dx@2) we also had these wild swings in BG. Giving her 4 shots a day you need to give the same carbs... BUT of course even when you do exactly the same thing you will get vast swings in bg. Boy do I remember! Going on a pump is work but it will help - basically you will only have one insulin on board (so correcting is much easier) - there is no dovetailing between the insulins etc. I encourage you to pursue pump therapy.

My son was diagnosed at 20 months and we were on nph with novo rapid for boluses. It wasn’t until we switched to MDI with levemir and novo rapid that I realized what a pain nph was. Trying to feed the nph was exhausting and unpredictable. It’s difficult to tell a little guy that he has to eat because of a shot you gave him hours ago. MDI is more like the pump where your child’s hunger drives what insulin is needed instead of the insulin driving what carbs are needed. We’re just on the pump now and it’s basically like MDI with smaller doses.
Food (and insulin) for thought!

My son was dx at 20 months and the first few years were filled with wild swings. He could drop 200 points in an hour. The same food 2 days in a row would cause wildly different numbers. When we started he was on MDI of Humalog, NPH and Lantus. We were very rigid with when he ate to deal with the NPH peak. This worked ok for us as did the fact that he was a creature of habit and wanted the same things to eat nearly every day. One thing that helped me was to keep a log of food and insulin to see if I could find patterns…we did not have a CGM.

This age drove me crazy, but his doctor reminded me that it is better to run him a bit higher than to allow him to go low too frequently. This was very hard for me because it seems counterintuitive and I am totally Type A and want to know that I can control this…I know that I can’t, which is maddening.

Hang in there, it does settle down with age. I know that doesn’t help now, but tells you there is a light at the end of the toddler years :slight_smile: It has never been perfect, but the swings are not so wild anymore.

I just wanted to add my support. You are dealing with so much right now. Hunker down and take each moment as it comes. It will get better. You have a community of others who have dealt with this. “If you are going through hell, keep going”.

My son was 18 months at diagnosis, and we managed with shots for the first 10 months. It *was* a rollercoaster. In part, our trouble was that we were using Humalog (rapid-acting insulin) diluted with saline because the amounts he needed were so tiny, we couldn't measure them with the syringe. Unfortunately that meant that there really was no consistency in how much of the dose was insulin and how much was saline! His BGs swung wildly between the mid-300s and the mid-80s. I got almost no sleep that whole first year because I was so scared that he'd drop low overnight, and the response was so very unpredictable. That ended up being the rationale for putting him on the pump once I was able to sort out the insurance situation. I would strongly recommend getting your daughter a pump if you can simply because managing the doses is considerably easier when you have such a small one. It is no walk in the park to start pump therapy, but if you read up on how it's done (Pumping Insulin is the book that is recommended by almost everyone) in the long run using a pump can really, really help stabilize blood sugars. We put my son on a Medtronic Paradigm pump and saw results very, very quickly; he had been consistently above 8% in his HbA1c while on shots and it immediately dropped to 7.4% once he started on the pump. There were a few more ups and downs in the interim, but we haven't been above 8% since he was 3 years old (he's now almost 7 and in his fifth year of pump therapy) and we've kept it consistently below 7.5% since he was 4.

Granted, there are drawbacks. Unlike with a syringe, you can't always be sure the insulin is getting where it needs to go (the cannula can get crimped, bubbles in the line can stop insulin flow, and so forth) but once you know what to watch for and what the warning signs are of stopped flow of insulin, you can fix the problem pretty fast. I would take a crimped site over having to give 6 injections a day any day of the week.

So yeah, as far as my experience is concerned, I'd say you're going through the exact same craziness we did. It *will* get better. Hang in there, you're in the right place.

Also! If you do get a pump, send me a message — I have a template for a pocket that you can sew onto the back of your daughter's clothes so the pump is conveniently located out of the way. It keeps it safe from her explorations and is a great deal less expensive than buying similar clothing, especially since most of the companies that sell such clothes don't make them in sizes for very small kids. (And, the clothes are plain and kind of boring – I like to make pump pockets with bright fabrics that go with standard kid clothes).

I went through this with my son when he firs diagnosed and after two years, he was placed on Lantus as one more insulin for him in the night. We then got him on the pump but he is still having issues with highs. I pray your baby's numbers decrease greatly and that the right dosage and insulin is found.