That's how I feel. Dazed and confused and wondering just what the hell is going on. We are still battling terrible lows post-meal.
On Saturday, Elise came back from her weekly breakfast with Fred complaining that she didn't feel well. She was 45. We gave her 18g and she only came up to 80. And 30 minutes later she was 55 and feeling awful. It took 2 cups (as in 500 mL) of orange juice to get her to 100 and finally feeling better. She ate a 25g lunch for which she received no insulin. Two hours later she was 132.
It was scary. I've gotten to the point where I am afraid to bolus her. I've adjusted her I:C ratio twice, and cut the suggested bolus in half. We still end up in the 70s.
To give you an idea how much her insulin needs have changed, here's what they used to be:
12a to 9:30 - 1:15
9:30 to 12a - 1:30
According to my math, this is what her new I:C ratios should be:
12a to 9:30 - 1:40
9:30 to 12a - 1:90
How can that be?
I don't know what the what is going on here. She doesn't appear to be getting sick. If she doesn't eat, she stays pretty stable, so I'm pretty sure her basals are okay. I feel out of my league here. Over my head.
And worst of all, I feel like I'm failing Elise. These past 5 days have really taken their toll on her. I need to figure it out. These ratios are far below what they were when she was on MDI.
School is looming on Tuesday, and unless I can figure this out, there is no way I'm letting her out of my sight.
10 months ago
I wish I had some words of great wisdom to send your way that would erase all of this diabetes craziness you have been experiencing lately. Know that Big HUGS are being sent tonight and everyday to you, Fred, Elise and Mattias. xoxo
ReplyDeletesounds like her basal needs to be reduced, try that for a bit. When we get stubborn lows we tend to adjust the basal first...maybe that will help? I hope things get ironed out quicker rather than later. :)
ReplyDeleteWOW that is a huge difference in ratios Jo! Totally right there with you on the low battles...hugs my friend
ReplyDeleteUgh! Hate it when things get that switched up...it's maddening!
ReplyDeleteHope the ratios settle in. I think it's be worth looking at her basals, too....not that you need anything else changing, but it could ceartainly help!
I jump to basals first as well...2 hours prior to the times I'm seeing lows, I'll make an adjustment.
ReplyDeleteWhen I'm feeding a persistent low like the one you describe, it's often because of IOB. There's usually a lot of insulin still circulating that needs the carbs. That could also be the case if her basals are set too high.
I used to program a zero basal periodically into Addy's pattern, especially to offset the fact that Cozmo didn't offer 0.025u basal dosage increments. Does the pod allow you to do that? She's 8 years old and still has parts of the day that her total hourly basal is only 0.025u/hr.
Hope it gets fixed ASAP!
hey honey - we have all been here. Here is what I would do, and remember, I am no doctor!
ReplyDeleteI honestly think it's the basals. You cannot adjust the I:C ratios without knowing FOR SURE if the basals keep her steady over her meal time, when she does not eat.
Come back to basals. Come to a a period of time before these lows hit, and lower them by .05. So if she's low about 9 am - 10am - come back to the 8am - 9am period and lower. Lower by .10 even if she is really dropping.
Can I be blunt? STOP worrying about the numbers and go back to what she NEEDS. Don't worry about how much things have changed. She is going to be using more insulin on a pump. Don't worry about comparing MDI to the pump or how much it has altered.
1. Get her basals in line by basal testing. Have her eat non-carb foods when you do the testing - cheese sticks, jello, diet soda. Yes I KNOW others say you shouldn't eat, but Gary Scheiner says it's OK and that's good enough for me.
2. When basals are in line, go to her correction factor and check that.
3. After that, check her I:C ratio by giving her a standard carb meal she eats, then check her 3-4 hours after meal time if she's in range.
You can do this. Sorry if I come across blunt. But you are NOT failing Elise. This stuff is hard.
Now, come on back to basals my dear. And email me if you need to. You can do this.
I'm so sorry you are going through this! We had this issue with my daughter as well, and it is so scary- I remember that feeling of being so scared all the time! It's almost like you would welcome a high at that point. I agree with everyone about lowering the basals, that is a great place to start. With Sam, (we didn't discover this until after several GI appts), she was actually lactose intolerant and wasn't absorbing milk, so that would happen whenever we would give something with milk in it! (Luckily this is fixable and you just have to slowly adjust the diet). I'm sure that's not what the problem is with Elise, but just thought I'd mention it and see if she has had any new things added to her diet. Big hugs and I sincerely hope it resolves soon!
ReplyDeleteHang in there, Jo! I will say a little prayer for the restoration of sanity!
ReplyDeleteThis happened to us 2 weeks ago for 5 or so days Will needed NO insulin to cover meals. If we gave him any insulin he plummeted. It went away as fast as it started, diabetes is weird!
ReplyDeleteYou are not failing Elise! You're just trying to figure it out. And sometimes it's hard.
ReplyDeleteI didn't read all the responses, but I did read Wendy's and Penny's because they've both helped me in the past.
I agree that you need to start with the basal. So some testing and see what happens.
Elise is so blessed to have you as her mom. You are doing a great job and you will figure this out. I'll keep you in my prayers. : )
One more thing. I went back and reread your post.
ReplyDeleteIf you really think the basal is okay, then test her 2 hours after a meals, then again at 4 hours after.
That will give you a good picture of her ratio.
FYI...Matthew's ratios change a lot. Especially breakfast and dinner. I have no idea why, but I find that have to stay on top of it.
His basal doesn't change that often....though puberty is coming.
Hope this helps a bit...
Ugh! We have been there. In fact, we were just there a few weeks ago. It was just like you described. Weird. And it went away just as fast and mysteriously. And then I had to change everything again. I don't know if it was Apidra or an illness or what. She never showed any signs if illness but J and I had some odd stomach stuff going on. I almost think that was it- but she never got sick. She did spike a fever for a couple of days a few days later. Who really knows? It could be anything. And you're not failing her- you're doing your best! Hang in there.... Try what Penny said. And feel free to curse a lot and bang your head into the wall!
ReplyDeleteHer Insulin to carb ratio has changed minus sixty percent approximately. How about testing a minus 50 percent temp basal during the day when she is eating? Keeping your new ICR in place. If you don't immediately see highs then it may be her basals. That will give you a quick idea if reducing basals will work. Next meal, keep that lower minus fifty temp basal on and adjust ICR again. Basal testing is completely mandatory; then adjusting ICRs. I basal test with food, using no carb food; will not starve kid all day. But low fat, eggs, string cheese, chicken veggie soup, chicken and salad. When starting test, though, reduce the basals during the day twenty to thirty percent to start, cause 60 percent less insulin for all food suggests a large imbalance. And, if basals are okay and this is what is truly happening (yes, it's possible); thinking celiac or some digestive imbalance. You may not know why she needs so much less insulin but if she does, she does. Reduce and reduce further. It will work. P.S. Your endo team? They need to step it up here. If they can't help you, Gary Scheiner helped us during pump start. I saw results within two weeks and he was spot on. Integrated diabetes.com
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