Due to some major computer problems (Santa should have brought a new hard drive), I can not access our pictures from Christmas. So I thought I'd take the opportunity to blog about what's really on my mind- that damn diabetes (pardon the language, but as long as my kiddo has diabetes, there are a few choice words that I can't seem to get out of my vocabulary).
Basically this post is a cry for help from my friends in the diabetic online community (the DOC), so if you don't know anything about basal rates, feel free to skip this post and come back later when I have pics of my little darlings at Christmas!
All right, so here's my frustration...NIGHT time basal rates. Killing me. I try VERY hard to keep diabetes in the background of our lives. We quietly go about our d-routines, not making a big deal out of it. We work hard, but try not to let our kids (and others for that matter) see our stress and worry. But at night times, diabetes RULES our universe. Here's the run down:
Day time basal rates, IC ratios, and corrections all seem to be dialed in almost to perfection. A few highs and lows here and there, but nothing out of the ordinary for a small kid like Robby (he's two), but at night time, there is not one ounce of predictability or regularity. We had three good months of fairly stable numbers, day and night, but these last two months have flipped everything upside down. He'll hit 350 with multiple corrections for several nights in a row and then for no reason at all, three nights later, he'll be low and we'll be feeding him several times to bring him back up. His insulin absorption rates seemed to have changed (much slower than normal), and he even metabolizes carbs slower as well.
We are frustrated beyond belief. A good night's rest doesn't exist. Thankfully, the Dexcom allows us to get a few hours of sleep here and there, but I'm exhausted and close to tears most nights. We feel like we've tried everything. We've dialed basal rates high, and then we've tried adjusting them lower, but with no predictability as to which nights he'll run high and which nights he'll be super low, it's impossible to get it just right. We even tried leveling out the entire night time basal program to .05/hour (he usually has three different rates throughout the night) to see if we could recognize any natural patterns or rhythms. Nothing. Nothing was ever the same. The only thing we know is that he's either SUPER high and seemingly insulin resistant (we'll give multiple corrections, set a higher temp basal, and on a few occasions have had to resort to a shot to bring him down) or he's drifting low all night (that's running on the same basal program. No changes). He's never in the middle. One night he'll use almost a total of 7 units at night and the next night, he'll use barely 3 units.
What gives??? What am I doing wrong??? How in the world can I get some sleep???
I know that there are a bizillion factors that can effect blood sugars, but sheesh! We eat early (about three hours before Robby goes to bed) and our meals are typically similar in their carb/fat/fiber make up. He's has had quite a bit of illness- one ear infection, two colds, one bout of the stomach flu (for sure without the Dex, we would have ended up in the ER with that one...mercy!), and just yesterday I noticed he's getting at least two new molars. During those times of illness, I expect crappy numbers, but even on days when he seems to be feeling well, we still can't seem to get any predictability with our night time numbers. Is this just the nature of the beast or is there something different I could be doing?
Help. This tired mommy needs a good night's rest.
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6 comments:
Since we're not on a pump, I can't really help you with the basal stuff.
I can tell you that we just came off the month from HELL, and I think we owe it all to a major growth spurt. Elise's numbers were all over the map and we were having huge problems with food absorption... to the point where she was getting her shot up to an hour after starting her dinner. Anything earlier and she would drop low.
We also had to correct Elise during the night several times this month, something he had only done a few times previously. When we took her to her endo appointment, she had grown over an inch and gained about 3 pounds in the last three months.
Maybe he's growing... they say it mostly happens at night, so that's why you're seeing crazy numbers. For us, it stopped almost as quickly as it started, but we were dealing with it for a good 3+ weeks.
Sorry for the novel. I know it sucks right now, but hopefully things will settle down soon.
Hey! Thanks for stopping by Candy Hearts!
I'm actually off to bed in a few minutes so I can't leave the reply I'd like, but ... just so you know ... YOU ARE NOT ALONE!
I feel like I've barely slept in the past (almost) 6 years!!!!
Managing a pump is A LOT of work. You're not crazy. You're not doing anything wrong. You're not imagining it.
The whole freaking mess just freaking BITES!
This all sounds very familiar.
I remember going through this exact thing, and making a similar plea. I seemed to be forever tweaking the night time basals.
I'm not sure I ever figured it out, but I have some theories -
1) growth is very unpredictable and hits Caleb during that 8PM to midnight timeframe.
2) even with similar foods, Caleb can have varied reactions at night, and food lasts in his system much longer than I thought, particular when he's snoozing.
3) Activity levels during the day impact overnight numbers.
4) The younger one is, the more sensitive one is to all the above.
I spent a lot of time documenting and analyzing all these variables, just as you have. I was able to improve it, but not necessarily solve it. As Caleb has gotten older, the swings are much fewer. I'm not sure exactly why, but I suspect it's a combination of his decreased sensitivity and inherent learning curve.
I'm not sure that helps other than to say that we've been there. As you said there are so many variables and it's a beast to try to isolate any one of them. Maybe just keep plugging away and documenting may eventually reveal some trends that will help.
That's not all that encouraging is it?
Hugs. :)
Ugh, I wish I had any idea what you were talking about or how to help at all. But, I haven't had a good night's rest in about 6 years and I don't have a kid with diabetes, so I (kind of) feel your pain. I know it's not the same. But I wish I could help. I'll pray for you and your family, I KNOW that will help.
I have been waiting for a few days to pass since we talked and since you posted this... hoping that when I came back to reread it and the comments - there'd be an answer for ya'll. I prayed for an answer for ya'll. I also pray that one day I'll know what I can do to help you out.
I just can't imagine what other parents do that are a little less brilliant then you and John and a little less loving... so help them. Ya'll are amazing and that handsome Robby is so, so lucky to have you two.
Just know that I love ya'll... am here for you... and you bet I'll be keeping ya'll in our prayers. The way our prayers are being answered in this house, it may take a year - but at least it's something. Love ya Lady!
You're in my prayers. I'm thankful that you are educating us. I heard someone talking about having a child with autism this morning. She said the best gift anyone ever gave her was when her 9 year old autistic child had a meltdown in a grocery store and she asked, "What can I do to help?" When the mom couldn't answer, she said, "I'll be right here for you if you need anything" and she stayed until she could help. I wish I could do that for you, that I was close enough to be a physical help. I know prayer helps, though. So for now, I'm here for you praying, until I can help in person some time.
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