Help! When do the rules stop changing???

I know this is long, but if you think you can help, I could use it!

I feel like I am constantly starting over! Just when I think I have things worked out, everything goes kablooey.

Well of course it all started at diagnosis.

Then we started pumping.

Then foods started to act differently for him - the traditional ones - pizza, chinese, pasta, cereals.

Then nighttime basal-needs started to fluctuate dramatically.

So we got all the dosing great, basals have leveled off, IC ratios and CFs are super - I even started to have success with extended boluses for those problem foods. Everything was going ok and I was actually starting to get some sleep, then, just recently...

a new batch of problems arrived. His tolerance for certain foods has changed. It's fairly new, so I haven't pinpointed it all yet, but he's more sensitive to just about everything at breakfast, although I haven't been able to get consistent results yet to make good conclusions. And the most troubling of all is dinner. Foods that used to be no problem are now nightmares. He had a piece of crumb cake one night (ok that was the first time he ever had that) and he was high ALL night despite continuous corrections. The same held true for a subway sandwich - just a wheat roll with deli meat on it - no extras - high all night. Then McDonald's -never a problem before (except that it's junk), but highs all night. Another night he had a couple of crescent rolls - high all night, and most recently, popcorn chicken -high all night up through the morning, which never happens. I changed the pod thinking it must be that, but then the last correction seemed to have worked, so I think it was the popcorn chicken.

These foods do not result in lows first then highs later. I've never understood the deal with fat and what constitutes high fat, although I looked at the popcorn chicken package this morning and saw each serving was 11 grams - that seems extraordinary. (I know I must sound like an idiot and that I feed my kids nothing but junk, but we really do eat well - normally). Is this him finally making his last step out of the honeymoon phase? We usually eat homemade, relatively healthy stuff, it seems to be the less healthy stuff that's causing the problem and bc we don't have it that consistently I can't quickly draw conclusions. I document everything, so over time I will be able to narrow it down, but I've started to need a reference guide for each food he eats because the straight IC ratio is not working for a lot of foods.

Has anyone else experienced this? Will this ever end??? I find this to be the worst thing about diabetes - the constant changing of the rules. It's so not fair!! I know life isn't fair, but I (as we all do) work so hard to keep him in tight range and I feel like I'm in a boxing ring always getting sucker punched.

Any and all suggestions are welcome! I would like to be able to check him before I go to bed, once again in the middle of the night to be sure he's safe and that's it. This constant correction nonsense is making me mad!!

Regards,
Lorraine

 

My motto with diabetes is that it is grey and gray....nothing is ever the same. Or lasts more then a few weeks with growing kids. Most of us go through a constant recalibration of the kids needs with insulin.

I have one child I have to hover over when exercise happens because different types of exercise make her bs drop like a rock. Yet, it is never the same type 2 times in a row. My second child a competitive swimmer doesn't drop until the middle of the night 6-8 hrs after exercise is completed. But not always. There is always those nights sprinkled in that when he turns down his pump basal he ends up sky high in the am...

Your not alone though remember that.

 

Well we are at a little more than 2 years now and so far the rules haven't stop changing. Just last night is a great example...I have gotten really good at guessing carbs when we go out and it's been a while since he was real high after dinner out. Well last night we went out and when I did his midnight check 452! Corrected and he came down fine and woke at 130 but I'm still not sure why last night was so off. Did I under or over bolus, was it a low rebound? Now with spring time and warmer weather and his older siblings playing soccer everything will start changing soon.

Sorry things have gone crazy for you but all I can say is that it is totally normal, totally annoying but also normal.

Good luck
Robyn

 

This is sums up the Zen of YDMV

 

I swear there are some days i just want to sit in the corner playing w/ my hair & rocking back & forth LOL

Kris

 

Rules never stop changing in my experience. D is a moving target. Nothing about it is static. Sorry Wish I could say otherwise.

 

Lorraine,
Your post sounds so familiar it's as if I could have written it. Jacob just had his quarterly endo appointment. Two days before the appointment I spent many hours pouring over the last three weeks worth of numbers and filled about 15 pages in a notebook with theories, calculations, formulas and conclusions. I came up with new carb ratio's, correction factors, and basal rates. I came up with a new theory on how to make combo bolus' work for the evening meal. I came up with a new plan for curbing morning highs. I looked over those numbers from the last three weeks and kept plugging new ideas into the numbers until the pieces started to fit. At his appointment his endo more or less agreed with my conclusions and we ended up going with a slightly modified version of my plan.

So the 2nd day on the new plan his BG is 425 two hours after breakfast. Then last night his BG drops most of the night and then climbs close to morning which is just about opposite of what my new plan should have accomplished. It's all very frustrating.

It reminds me of the same errors I made a few months ago. I studied everything and came up with a very complicated basal plan with many segments. I had several different carb ratios throughout the day and multiple correction factors. When I realized my theories weren't working I simplified everything. I combined several basals so that he only had 3. I went with two correction factors and three I:C ratio's instead of four. Things got better but not ideal. I think I need to get out of my head that I can master this. I do far better with the K.I.S.S. plan (keep it simple, stupid!)

There are so many variables with a kid's D that the best advice I can give is to try to simplify so that there are less things to adjust as things change.
Managing a child's D is like throwing darts at a moving target......

 

With our combined 40 years of diabetes here....no 2 days are ever the same.....sometimes I don't feel like 2 hours are ever the same.

You are not alone, it seems like just when we get it figured out we are all often "reinventing the wheel" around here.

Hang in there......We're all here at CWD for you!

 

High fat causes more problems for Elizabeth than sugary foods sometimes. In particular, trans fats are very unhealthy. We stay away from the following types of foods:

Anything with refined wheat (look for "enriched" or "bleached" flour in the labels), high fructose corn syrup, trans fats (look for "partially hydrogenated" or "modified" oils in the label), and we try to stay with natural sugars, or products that use evaporated cane juice. It really does help stabilize blood sugars, at least in our case. If she eats breaded chicken that does not have trans fat, it really makes a difference, even if it has 11g of fat.

However, when you do buy packaged foods, or go to restaurants, it's difficult to manage finding foods without these types of ingredients. They are all over the place in the U.S.. Europe has banned trans fats and high fructose corn syrup. New York City has banned all trans fats and restaurants are not allowed to carry them. All I can say is read labels very very carefully. Not all fats are identical, and can cause various problems. I always carefully checked labels before Elizabeth got diabetes, and now I am extra careful.

It's weird, but pizza made at Whole Foods (a healthy grocery store/eating place) will not raise her blood sugars to the stratosphere, but restaurant pizza will. After days of great numbers, we'll go to a restaurant, party, and bang, there will be highs and all kinds of bad numbers. I'm even thinking of getting her birthday cake this year from Whole Foods so it doesn't have trans fats. They make frosted sheet cakes for parties, and they're delicious. I still have to be leary of the fat in it, but whatever small amount I can do, helps.

 

Maybe in this case it is YDMVD (Your Diabetes May Vary Daily)

 

I understand..............

Lorraine, I feel for you in that we are in the same situation. I just can never get it right no matter how hard I try. It is as though someone is daggling a carrot and I keep chasing it but to never get except maybe a lick! We have wonderful nurses at school and I feel like I am constantly explaining why we went low or why went high..... I have started basal testing and then a inset goes bad or it is someones birthday (cupcakes). It is very frustrating. Kristin

 

Kristin, don't you find the cgms helps quite a bit though? I know I feel like I have a much better handle at catching patterns now then I did before cgms. We try to only use it when things go haywire, which seems like all the time lately!

 

Honestly, my first thought when reading this was that he WAS dropping then rebounding. Not because of fat, but because maybe his dinner ratio is too high. Do you know for sure he didn't drop? Because you tested a lot? Or are you thinking it's not the kind of food that does that?

The reason I'm thinking rebound is that he's not coming down with corrections, If it was just a mis calculation of carbs or fat, the bg should come down. On the other hand, correcting a rebound will keep them high bacause the body can't getr out of panic mode...

I would try feeding him one of the problem meals again and test a lot to see what happens...

I hope this helps...:cwds:

BTW, what I call "adjustment periods" are definately part of it...We ALL go through them, you WILL figure this out..

 

Ok feeling stupid but what is 'cgms'?

Kris

 

CGMS is Continuous Glucose Monitoring System

If you need more explanation, just ask

 

Thanks!! I got my own little cheat sheet going on notepad that I just keep adding too lol. You'll find I tend to ask a LOT of questions when learning something. Please let me know if I ask too much!

Kris

 

That will NEVER happen. EVER!

 

Also note that when you start the pump, there is less sensitivity to insulin. When you use Lantus (did you use Lantus prior to pumping??), there is higher sensitivity to insulin, so you usually don't need as much. It could just be that the need for insulin has dramatically took a turn for a big increase because you dropped Lantus. I bet his ISF(s) & carb ratios need to come down. Did they already change a lot when you went to the pump?

 

Thanks all. I just have to stop thinking I will master this. I really thought we had it under control - we had a good stretch with very rare highs, but I truly think he's finally come out of the honeymoon which is causing problems in the early morning hours, which we never had before. Once we got through the 10PM check, it was usually smooth sailing. He almost always woke bt 80 and 100 and that's becoming harder to achieve.

We've been pumping for almost a year so in general I think it's not a matter of sensitivity to a new treatment. He's not rebounding - what I've seen lately are highs in the 200 range that don't easily correct and I check him almost hourly. As I understand it a rebound would result in a much higher high. His dinner IC ratio is 56 (bf 17, lunch 35) and I haven't changed that in quite a long time and is usually works perfectly. Just these couple of nights have been a little nutty and after gaining what I thought was a good period of experience, they totally took me by surprise. I'm just having trouble understanding why things have just changed seemingly out of nowhere.

I read so many threads where people seem to have everything under control - I assume that means BGs always or nearly always in range. Perhaps these are just more experienced people who have come to accept that the definition of good control is something different. I'm struggling with that. I'm still not convinced I can't tackle this one!

Thanks again for the support. I felt like a big whiner after I left that post - thanks for not making me feel like I was asking stupid questions!

Lorraine

 

Don't be so hard on yourself. Even people with the best control, and we're talking about Type 1 adults here, only have their numbers in range about 70% of the time.

Diabetes throws even the most experienced people for loops.