I'm at my wit's end (is that supposed to be possessive? it's my wit right? whatever that is) when it comes to Riley's numbers lately.
One good thing is that the average on his machine has come down about 30 points since his last endo appointment. But, we've had quite a few lows.
The problem is the lows come at different times. If he's having consistent lows at around the same time every day then I know what to do. But, when his lows (and highs) are all over the place I'm at a loss.
He had a low in the 50s night before last, just before bedtime. I don't sleep well anyway, but a low like that just before I tucked him in to bed didn't help any.
I guess we overdid it because he ran high all night. Oh wait, he runs high all night every. freaking. night.
I have increased carb coverage. I've increased his basals. We correct him at night and still he stays high. Again, not good for my sleep pattern. Because when I correct him in the middle of the night even though he hasn't really been coming down I still worry that he will eventually crash.
His basal rates look crazy to me. He always had his lowest basals leading up to bedtime, but now his highest rate is from 9 PM- 12 AM. And, still, he's high. All. night. long.
Is it because he's growing? Is it because he's not active at night? Is it because his pancreas is helping me out during the day, but at night it need it's rest too?
I don't know. I try and try not to let the numbers get to me. But, they do. Still, it's better than it used to be. Before ALL the numbers got to me. Now, it gets to me when he runs high for a while or we have a lot of lows close together.
Yesterday at school he was high all day. We kept pumping the insulin in. He'd drop some, but he still stayed in the 200s most of the day. And, someone had a birthday party yesterday. So, he ate a cupcake with a sugar of 268.
He usually gets snack at my mom's after school but the birthday party was at the end of school so I told my mom not to give him snack. But, he'd gotten quite a bit of insulin at the party so I told her to check his sugar at some point just to make sure he was OK.
She checked him at 4:05 PM (1 hour and 15 minutes post-party insulin) and he was 168. At 4:58 PM ( a mere 53 minutes later) he said he felt low. His sugar was 50. He got a juice box and 15 minutes later he was 42.
When Michael walked in the door I looked at him and said, "I give up." I'm just so frustrated with it all.
Then, last night before bed he was in the 300s. Rebound? Maybe. His pancreas screwing with me? That's more likely.
I'm just at a point now where I feel like I can't win. I look at his numbers and I'm at a loss of what to do. The words basal, bolus, insulin on board, and carb ratio swim around in my brain and end up looking like balus, bosal, carb board, and ratio on insulin.
It's just stopped making sense to me. Riley's endo said I could fax his sugars to her and she's see what she could do.
But, what can she do, adjust here and adjust there only to adjust here and there again in a few days? All the while I get to see Riley's eyes glaze over with every low and have my heart ache with fear with every high that just won't come down.
Sorry to be such a downer but I'm feeling a little inadequate right now caring for Riley's diabetes. Nothing I'm doing seems to be helping.
Sometimes I feel like diabetes and I are in a race. And I'm so afraid it's going to win.
11 comments:
In my experience, it's always like this. You adjust things, things are ok for a day or two, maybe even a week, but then it starts again. When O was that age, I was constantly tweaking things - and this was back in the R/NPH days, so it was more difficult to tweak. It's a constant battle for us, too. I've just accepted that this is how it is. I'm never going to get ahead of it because it's an unpredictable disease. There is no if X, then Y with diabetes.
I've never posted a comment but I just must. My son is 6 and was diagnosed 7/7/06. He is still on injections and we are having the same issue. I increased Lantus and everything was fine for a week. Now we are right back to high all night. He's had a couple inconsistant lows (40's) also. I finally called the endo today because like you I think "what can they do". It's all very heartbreaking.
Oh, Penny. How I wish I could reassure you that this will get better. But it's not really the way it works. Julia is right - it's a constant battle. It gets somewhat better with age, but usually, I go a week all good - then, inevitably, something needs adjusting (basal, bolus, whatever), another few days - things looks good - and then it's back to adjusting. :S
Just do your best to look for patterns and make changes accordingly. You're doing a great job - you know I believe that wholeheartedly. It's all too much sometimes, I know, but you - and Riley - are going to be OK in the end BECAUSE of your determination to keep an eye on things and get this thing as much under control as you can.
((((Penny))))
I hope it makes you feel better to know that probably around the same time you were telling Michael "I give up," Susanne was saying to me that she gives up.
I know endos are just doing their jobs, but seriously, what are they going to do that we haven't already tried? We've been at this long enough.
I feel your frustration. It's gets difficult trying to figure something out that is not capable of being figured out.
Julia,
I've accepted that this is how it is. I guess my problem this time is the adjustments I'm making don't seem to change anything.
It used to be a conolation that if I made some adjustments I knew things would get better for a little bit anyway. But, it hasn't for a few weeks now and I'm just frustrated.
I know it's probably because Riley's pancreas has finally quit for good. That doesn't help me feel any better either.
Anon,
Thank you for commenting.
Nicole,
As always, your comment makes me feel better.
Carey,
Send Susanne my regards.
You're right, it is so frustrating trying to control something that just can't be controlled. Even though we know it can't be controlled, we have to try anyway. It just seems so futile sometimes.
I think it is because there is no "=" sign in diabetes.
We do the best we can to be proactive and manage our insulin based on patterns we observe.
The rest of the time we react to what we see and chalk it up to the "WTF" fairy. She's (he?) is a VERY busy fairy in the diabetes world...
Penny - you DON'T have to feel inadequate! It is the f@#!ing disease. Honestly Penny there is no understanding this disease!!!! Yesterday out of the blue my bg went up to 195, after a VERY ligh dinner where I definitely bolused enough! NOTHING peculiar happened in the day. I promise you NOTHING! I ended up needing 4.5U for what usually needs 0.75U. Finally at midnight I said if it hasn't gone down NOW I will change the cartridge and the needle. It had gone down and everything has been hunky-dory since then! So it wasn't the site absorption, it wasn't the insulin, WTH was it? The only possible explanation is an air bubble?! But THAT it cannot be either b/c I saw no bubbles and I wear the pump upside-down so that the jiggling cause the bubbles to remain in the cartridge and not leave the pump. Join the club of people who understand nothing, NOTHING!
I know doctors don't seem to agree but I do think my daughter runs high during the night when she is in a growth spurt. Also watch the fat content of dinner and how that affects his nighttime numbers. My daughter would run high nights that she had mexican, peanut butter, pizza or mac and cheese for dinner. I learned (but sometimes forget) to give her an extra bolus at her bedtime snack to cover the fat from her dinner which always hit 4-6 hours later. Just an idea that has worked for us.
We're ALWAYS adjusting, tweaking, scratching our heads, perplexed. It's a daily thing with us.
There really is never a break from thinking. Doing is easy...do a finger prick, do a dose, etc.
But the figuring out and calculations and trying to outsmart diabetes or trying to predict whether he'll be low at the same time for more than a day or two or more in a row and wondering if we should adjust, and then kicking our selves when we should've is exhausting.
We must be going through the same thing! We are having the same problem with Izzy. But, the endo has increased her Lantus and it is making her wake up low. So I'm trying to be more careful with it and am watching her closely at night.
I've just about given up trying to figure this out. It is just too crazy right now.
I'm thankful you wrote a post on this subject; it is very helpful to compare notes. My niece is 10, already in puberty and I realize the highs at night are growth spurts. However, it is very difficult to be as aggressive as you may need to be to control BS. Our last CDE told us to take a basal time period, 9pm to 12pm being one period, 12 midnight to 3am being another and 3am to 6am being the final period. These are when her basal patterns change. It will be different from your son's. Add up all the basal and correction boluses from 9pm to 12am (which is three hours) and divide by three. That will give you a basic guideline of how much she is using per hour. Do the same for the other time periods. You can use this as a guide for adjustments. And of course that will change and you will have to do it again. For instance, after a basal test where she was getting .575 12mid-3am and .500 3am to 6am, she went sky high two days after the test. Despite raising her basals twice and adding 10 percent plus temp on top of that she was still high. Turns out when I did what the nurse suggested, she was needing more than a unit an hour! So I went up .050 the whole night and put a temp plus ten percent on top of that. She was in the 190s -150s, a little high, but on the right track. It is extremely frightening to have to raise the basals so very high and you pretty much have to check every couple of hours when you do this. But her basals increased almost 50 percent during this last growth spurt! Unreal!
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