That must be horrible to deal with! It's much easier for me to play around with stuff. I've had a pump for 5 years and have noticed that if I'm even a little bit off, like .2-3G carb/ U or +/- .025U/ hour basal, it makes the puzzle very hard to figure out and can produce numbers that are screwed up all over the place that linger all day. I think that 133% is a good way to approach it. If you can get some improvement with that, it will be good feedback that you and/ or the doc can use to get things closer to where they need to be. I think that doctors, while they want to be making the decisions, also will like that you can say "we did this and it produced these results" as I'd hope it would make his job much easier!
'they' should be walking you through this, step by step. i was thinking, since they seem to think he's high and way off target because he's sick (maybe so but having high blood sugars for an extended time can also make one 'sick'), i tend to lean towards incorrect pump rates. when he's been sick in the past, has his blood sugars gone way up to the 300's and been very difficult to get down? i test more then 9 times per day whether on pump or not. Do you have/use a CGM? Rebound highs in the middle of the night can also cause very bad highs. And, on pump, as I'm sure you're aware, you don't want to stack insulin especially when doing injections too. what pump is he on? how much did they calcuate down his basal from MDI to pump? Also, i'm sure you're aware, but it does take a couple hours to see the basal adjustments either < or >. Just be careful, please. I felt the same way, I just ended up having to give shots on pump when BG's were high because they wouldn't come down; it's all about the basal, it seems, either MDI or pump which can be a nasty little bugger to get right.
I know high numbers for too long can make you sick but I actually didn't think about it being a contributing factor until you mentioned it. His numbers were good when he got sick and he definitely has cold symptoms, which my daughter had first, leading me to believe he caught it from her. In the past when he's been sick he's never gone this high. Maybe the high 100's to low 200's but never this bad for so long. He is on the Tandem T:slim. I am very careful about doing corrections when he still has insulin on board. No, we do not have a CGM. I'm not sure at this point if the doctor would recommend it. I don't have any complaints with his doctors, they have been great so far. This is new territory for me so I don't know what to expect from them. I don't want to make too many changes on my own to his basal since he is newly on the pump but I will do what is necessary to get his numbers down. Luckily we've only had to resort to an injection once and it was in the middle of the day so no worries about dropping too low at night. I still wonder if his body is simply not absorbing the insulin well enough with the pump. I had expected things to be better and instead we've been fighting a losing battle against high numbers for 4 days. We started at about 75% MDI and increased slightly for nighttime highs and then he got sick. He's been getting stuck with needles for 2 yrs already so we were looking forward to a little more freedom with the pump and less needle pokes but this is not going as smoothly as I had hoped. I'm waiting for the doctor to call back soon so I have my fingers crossed that we can resolve this today.
The hardest thing for me is trying to control the function of someone else's body. Yes, my son has been diabetic for 2 years now but he is only 10 and I don't know that he is yet as in tune with the fluctuations as an older person or someone who has been diabetic longer would be. He also has very mild symptoms when he is hypo/hyper. It's quite often a surprise when he checks and we find out something is out of whack. The 133% didn't help as much as I had hoped but at least I can say we tried. Right now I just want him in range even if it means cranking up the dose for now. Because his hourly basal is low at .28 I don't want to go crazy and raise it too much. I know we will get things straightened out but considering how important it is for him to be in range I am quite anxious to fix things now!
When sick, correct by shot if the pump absorption is too slow. Sometimes pump absorption is slower. Don't worry about it. I was just sick and even using shots I had to use a lot more insulin, absorption was really slow, and my numbers went to heck.
Thanks for the input. I wouldn't wish diabetes on anyone but it is nice to get insight from someone who actually lives with it. The doctors are great but when their day ends at 5pm so does dealing with diabetes. I would sell my soul for a cure but at this point I'm doing my best to simply control the diabetes beast :)
OH, so sorry to hear. That's kind of been my experience with the pump, too. Incredibly high then crashing lows. Are you checking for ketones; how high is he? I would HIGHLY recommend a CGM/Dexcom, if inclined on your end. For me, I would never attempt a pump start without it. However, many of course have and successfully. When you say sick, what...like a cold, the flu or high blood sugars sick - is he throwing up - what does his Endo say, are they too concerned? Anything over 240 with pump starts should be checking for ketones, especially with long periods of high blood sugars. Hang in there...this is tough...I'm sure you're worried. I don't know too much about the T-Slim...but my guess is he's high not because of being sick - it's his insulin levels that are causing him high, or maybe sick with ketones (please check). Again, if basal is off, it throws everthing off, if his ISF and I:CR were set too low, it won't work. The pump is great and can be very beneficial...but it's such a process, for some it seems (myself included) that just wears you out. I always felt like I simply had no control over anything and didn't know what to do. A shot is a shot, goes in and it's done, ya know. I'm a bit worried for you, please keep us posted. :)
there should ALWAYS be an endo on call, please don't hesitate to reach out to them, regardless of what time, if needed...that's THEIR job! We as type 1's are 100% dependent on insulin to survive. Going on an insulin pump is a very different experience and they need to stick with you on this. Are you seeing a CDE/Pump Nurse...damn, they should be helping you..ugh! When I've started on pump, I had constant communication with my pump nurse, even on weekends via cell or email.
Hi Jennifer I’m 12 and on a pump and your son is probably going through "the honeymoon period"I measure my bloods in mmol so I’m not sure how high 300 is but my bloods were really high when I first went on the pump ,just remember NO MATTER WHO YOU ARE YOU ARE SUITABLE FOR A PUMP!! His body has got used to shots to much that having the pump giving him a little bit of insullin all the time will just take a bit of time to set in. He just needs to “break in” his pump,like a new pair of shoes! Don’t worry his blood levels WILL SETTLE!!!
well, they don't and won't just settle unless the pump is programmed correctly with the correct basal, I:CR, ISF, duration of insulin, etc...From what I've been told, the basal works on the liver, the liver both produces and stores glucose (that's not the technical term for it, but oh well). if the basal isn't enough to stop the liver from dumping glucose, BG's will continue to rise and not come down. some do great first starting pump, others..well, not so much. it's not about the body getting used to small doses of fast acting - we all take fast acting daily, it's simply about get the pump rates/ratios correct. Also, if one is spilling ketones, that can also cause higher highs, etc...
Thanks, Sarah :) I spoke with the CDE just now and she was as dumbfounded as I am. His first week on the pump was great with beautiful numbers. Then he got sick. For whatever reason this sickness is making him very insulin resistant. If he had been high and then gotten sick I'd assume it was the numbers but he was well with good numbers then got sick and then went high. Thankfully ketones have been trace to small. Right now his doses are pretty high. His basal is 200% and correction and bolus are adjusted as well. I'm keeping faith this will help control his numbers until he's completely better. It's amazing that he only has a cough right now and that simple thing can wreak such havoc. All other symptoms have disappeared. I will talk to the CDE again on Wednesday to go over his numbers. Here's hoping for better news!
So for now basal is at 200%, carb ratio reduced from 1:27 to 1:22 and correction from 1:100 to 1:70. I will also pad his bolus a little if he eats something high glycemic and extend the bolus at dinnertime. Originally we were told to not correct in the middle of the night unless he was 250+ but now we will correct if he is over his target of 130. Hopefully this will help break the cycle of being too high at breakfast which in turn creates highs all day. It seems to be harder to bring him back down if he's too high in the morning even with extra insulin. The pump nurse strongly feels it's his illness, even though it's very mild, that's causing all the trouble. Thanksgiving is in 3 days! We were soooo excited to have a pump this year so I'm very anxious to get his numbers back on track. There is pumpkin pie in our future :D Again, thank you so much to all of you. Sometimes, logic tells you one thing but emotion over rides. I know stressing won't fix things, action will, but it's hard to not get upset when things are not going as well as they should be.
OK, good. I thought he had just started on the pump not been on it a for nearly 2 weeks. so, hopefully things will get better under control for you soon. :)
Thanks, Katie :) Anthony is 10 so a little younger than you. 300 would be about 16.67 so it's pretty high. Especially since it's been that way for a few days already. I'm hoping since he's feeling better and has had his pump for almost 2 weeks that things will get better soon. I didn't think it was possible for a pump to not work but it was frustrating for him to get his pump and then have his numbers get so bad. Now we are trying to hang in there until things get better.
Ok, his doses right now are high. Compared to what he would normally get they are quite high. BUT…we just checked his blood sugar and it was 86!!! Woohoo! I’m sure we all know that sense of relief when your number is great 
Yay! We haven’t seen that in almost a week.
Oh thats such great news!! My Kelsey does go high as well. And not till we see physical signs that she is sick (cough etc). Glad he will be back to normal. You will enjoy that pump now. I forgot to ask.. what pump is using?
Yay! Good news!
Gene he is using the tandem t:slim
Oh sweet! Kelsey just got the T-slim 4wks ago