Recently diagnosed t1d daughter, numbers all over the place :-(


#1

Hi everyone, just joined the forum.

We are 2 weeks into this new world with my 5 year old daughter and of course we are freaking out.

In a nut shell, we got sent home from the hospital where they told us to give 4 doses of Lantus at night and .5 dose of humalog per 15g of carbs.

We can’t get the numbers into the 100-200 range, its all over but thankfully no lows. She wakes up in the 200-250 and has 30grams of carbs, according to our doctors we would have to give .5 in order to correct her being 250 before breakfast and another 1 for her carbs for a total of 1.5 before she goes to school.

I am guessing she is nervous to be back in school with Diabetes in the back of her mind, but her numbers have skyrocketed to 420 in less than an hour and then comes down over the course of the day. We are scared confused and our next dr. appointment is still a week away…

any insight or suggestions will be gladly appreciated, this is completely new to us and we haven’t slept in weeks.

LB


#2

Hi again!

It’s been some time since my son was diagnosed. At that time, we would log all his numbers - doses, carbs and bgs - and call them in each day. We would discuss dosing changes daily with a CDE at his doctor’s office.

That sounds like something you are not doing, is that correct? Did you receive instructions and no other guidance until your next appointment? Is that three weeks of time passing in between?

From my experience, I think there should be no surprise that her numbers are variable right now. I found it really helpful to log Caleb’s data to note trends. With all the numbers in one place, I could scan points during the day over several days and see if a pattern emerged. I found that I had to keep things consistent in order to do that. So times and things he ate were fairly static until we developed confidence with his dosing.

I remember that initial dosing is really just a guess - you need to start somewhere - and you tweak based upon experience. We’re still tweaking, but it’s definitely only fine tuning at this point. It’s much different in the beginning.

The other thing to keep in mind is that if her bgs are consistently out of range, she can build insulin resistance. This means it will take more insulin to get her back in range than if her blood sugars are being maintained within range. For my son, his correction factor for something over 275, is different than more something under 275. That’s a more advanced concept that you don’t need to tackle now, but it could be contributing to the difficulty in getting back in range.

I would try and identify trends if you can, then call her doctor to review. Be her advocate. I remember on those daily calls getting suggestions that didn’t make sense to me. I was beginning to understand Caleb better than the CDE. I would make a suggestion and explain my reasoning and get approval before making any changes, but soon enough, it no longer made sense for me to call in daily.


#3

Thank you Lorraine, we have been logging everything but we don’t have any calls with the dr. we where very happy with them in the hospital but after we left it was radio silence from their office until the next visit.

I understand what you are saying about getting to know her better than them and also how correcting from a very high high is not the same than when its in the 200s, I am sure that we will get to reduce these huge swings soon with some dr guidance and some more studying from our part and reading as well as some tweaking…

thanks again.


#4

One suggestion when new, is to be boring, with repetitive meals at about same time. I know, tough to do with 5 yo. There are so many variables, including her pancreas still sputtering out insulin now and then.

Sounds like you are doing great. I was diagnosed at age 5, over 50 years ago. Things were much different then, but my mom was still overwhelmed with my diagnosis and having to give me injections (huge needles back then!) and measuring my food portions.

Welcome!


#5

It was a little over 30 years ago, but here are some of the things I remember from when I was first diagnosed combined with my experience since then. First of all, try (as best you can) to determine whether the highs at different times of the day are from the food or not (some might be from the food, others for other reasons). If it is the food, you can adjust the carb ratio for the humalog. If the high is not from the food, which means it probably came on more slowly than a high from food, then you can probably increase the amount of Lantus. I don’t know exactly how many BGs you do, but one thing that can help determine whether the numbers are from food is (this may sound like torture for a 5 year old) to do a BG immediately before and about 2 hours afterwards. This may be tough to do during school days (although my mom made me do a single BG before lunch at school, I ended up getting to know the school nurse very well), but I would at least suggest it during the weekends. I think the meal doses are the best place to start, and remember not to try to fix everything at the same time, because that will just make it harder. I’m not a parent, so I may have misstated some things, but you have already taken step 1: being a caring parent.


#6

makes a lot of sense, thank you for the suggestion… keep as many variables as fixed as possible and adjust the doses…

thank you.


#7

This, to me, is totally unacceptable so soon after dx. I would be calling to ask for help with adjustments. In fact, like Lorraine, we logged all carbs & BG tests & called them in every day for the first 2 weeks. You shouldn’t be forced to handle this on your own at this point.


#8

I am surprised there is not more guidance. :frowning:


#9

Technology can give you and your daughter the feedback you would both need to get her under control and keep her under control faster than anything else. The sooner you can get her on a CGM, the better. That will allow you to make small tweaks and follow the results very promptly. It will also help you monitor remotely for any dangerous hypoglycemic events that can come about at any time of day or night, giving you additional peace of mind. Dexcom is approved for children age 2 and up.


#10

thanks CJ, we have the G6 and just these 2 past couple of days we’ve managed to stay between 80 and 240, the doctors had told us that because she is just 5 to give her the insulin AFTER the meals so we can confirm everything she ate or didnt eat.

because of this she was getting her dose when her bg had already skyrocketed and I think this was hurting the insulins effect. since my daughter eats well we’ve started giving her insulin 15 minutes before eating and this has helped tremendously.


#11

That makes sense.

That makes sense.

:stuck_out_tongue:

Obviously you know your daughter. But point being, both approaches are reasonable. So, it does not have to be an “all or nothing”. I find the benefit of giving half the intended bolus as a pre-bolus to be significantly more than “half effective”.

Even as a much older child, if it is unknown what will be eaten for breakfast, I suggest that just give 2 units as a 20 minute pre-bolus. Then bolus the rest when it is decided what and how much. It really makes a bigger difference than one would otherwise expect.


#12

If you want to make an excel spread sheet with the data (or handwritten records), and post it here, people might be helpful in providing more info. This is a very data driven illness and its hard to comment without data. I know you are new and are probably still figuring out how to keep records. But, the answers are there.


#13

Your pre-bolus should continue to help a lot. You may find that depending on a whole host of factors, you may want to look at the curve on the CGM rather than a fixed 15 minutes. Some circumstances require a wait of a little longer than 15 minutes to keep the numbers from rapid climb. You may want to test a few foods that you can later use as a control group for breakfast. Try some low to no carb foods like hard boiled egg, scrambled eggs, cheese, Chia seed pudding, etc. she may like. Then from there build breakfast with a few more carbs as long as you can do that and keep the blood sugar levels within your comfort zone.

If the day starts pretty much in control, it is much easier to keep the rest of the day in control which is why working on a good breakfast solution is a great starting point.


#14

Because I am quite insulin sensitive, when my BG get very high, over about 200-250, I like to do corrections in small steps, instead of one giant leap to my goal of BG=100.
That also help me avoid serious problems with hypos.

I also use a Novopen Echo insulin pen that I can adjust doses in 1/2 unit increments. That also helps, at least for me.


#15

I am also quite insulin sensitive and years ago used the Novolog child insulin pen as it dosed in 1/2 units. That was still not quite good enough to stay in good control so went to digital pens about 10 years ago that dose in 0.1 units.


#16

Thank you thank you thank you guys…

all great points to help me understand this new life a bit better, I think I did ok today after each meal, we started the day a high but had a good afternoon…


#17

You did great!!! :smiley:


#18

Not bad at all! You did better than I did today. I hit 300 twice. :stuck_out_tongue:


#19

I just really have no idea what should be a good day for her, is it normal to experience spikes after eating or is the timing and amount of the dose supposed to offset the carb consumption pretty evenly?

Thankfully we are meeting with a new Dr. on Friday. LB


#20

Yes, spikes after eating are common. But, you will figure out, in time, how to deal with that using dose and timing. Give yourself some time to just learn how to carb count and keep records. Your off to a great start. You are asking good questions.

When I was a kid, it was easier/less complicated. The Doc would just say, “Take ___ units at dinner and eat ____ carbs.” That’s a little simpler, but may not be practical with one so young as yours. Talk to your Doc.