Anthony had his 3 month check up with his Endo on Monday. Even though Anthony started his pump on 11/14/13, the first 40 days I am not counting due to uncontrolled BG due to having the wrong infusion sets. So when we went to his appt we had only had good sets for 10 days. Everyone knows that 10 days is not enough to perfect pump doses. So we've had some lows. I am aware of them. I fix them. I have been checking his BG several times a night for 2 months. Well, to make this shorter, the doctor wasn't happy with the 60's. The pump nurse and I have been adjusting basal rates to correct this. The doctor told me that I need to gets his numbers in the 150's now and if I didn't like it I need to change my mentality about him being 150. What do you think about 150? Am I wrong to believe that in range is 70-120? Am I crazy for wanting to stop the lows but not have him always at 150? What's wrong with 100 or 110 or 120? I told the doctor 150 was NOT going to happen and I think she was a little offended. I'm not trying to keep him at 65. I know 65 is not good but 150?
It sounds as if two things are trying be adjusted at once. That almost never works. 150 is a bit high but many people safely live in that range a good deal of their lives. For me the lows are more dangerous so it makes sense to work on that first then work on the highs. Besides she is not saying average 150, max at 150 I believe. Bringing highs down is easy compRes to getting the floor number. Also this will never be a perfect 80 to 120 it will always flux you just don’t want him living high or low as both are tough.
I really feel for you. I hope you can get some resolution quickly I know adjusting a pump for a child is so tough.
Jennifer, i am happy you have found the solution for your major problem. now comes the fine tuning. dont be too hard on yourself or anthony…
150 is not that bad, and the numbers look way better than in your last post.
good luck and take care
SC
I've been Type 1 for 36 years and it is impossible for me to always in be range. That's the nature of the beast. I do my best and make slight adjustments as needed. This may sound harsh, but if you try to keep him in perfect range at all times, you'll both be miserable. And, he is at much greater danger of a severe hypo. The only time I'm really comfortable at 70 is when I am at home, and not very active. Your body has all kinds of regulatory ways to prevent a hypo. His does not. Please listen to his doctor.
I really think 2 things are working against each other. #1 is I have this obsessive need to keep D in submission. The best way I can do this is to do everything humanly possible to keep my son's numbers in range. 150 (to me) is not is range. #2 is his doctor is all about safety. To her 150 is much safer than 65. Part of the problem is that his numbers were around 300 for several weeks straight. The pump nurse spoke to me during those tearful phone calls when I just couldn't correct it. She knows the emotion behind the situation. The doctor only knows what the chart says. I feel like I worked so hard to get the numbers down. I woke up literally every 2 hours every night for weeks and weeks. Who needs sleep, right? I'm patting myself on the back for finally correcting those horrible numbers and getting him back in range and now this doctor wants me to settle for a number above range? I understand lows can be dangerous. Hence me waking up 4 times per night to check him. I think her need for safety clouded her view of the hard work Anthony and I have put into getting his numbers down. At the end of the day, he and I will do what's best for him. It just would have been nice to hear that they were glad he was doing better and now lets work on getting him a littler higher into a safe range. Instead it was more like I was being negligent and needed to immediately get him into this higher range to save his life. I don't need a pat on the back from the doctor but a little acknowledgement of what we have accomplished vs. a scolding because we weren't doing what was best to her would have been nice. I've tried to make it clear in my other posts, even when I was totally complaining, that I try very hard to do what's best and to keep him safe and healthy. The doctor is supposed to be on our team and while this practice has great doctors, there has to be some allowance for what I feel to be true since I am the one who takes care of him every single day. Ok that was a long rant so thanks for listening. Hopefully if I can make the lows significantly decrease before his next visit in April she'll be less adamant about 150.
Michelle, that absolutely makes sense. I do not want him to have a severe high or low. Ever. He wasn't out of control due to lack of checking. We were checking his BG 10X per day. Have you ever taken a test that you really studied very hard for? And then when you got a B and were proud of yourself someone comes along a puts you down for not getting an A? That's almost what it felt like. We had been and continue to fine tune his doses. It's not an overnight process. I just wonder if with so many patients they can't look so much at the big picture of what you've been doing but focus more on where you currently are. I understand why she feels 150 is good. However, the lows were sometimes, not every time, and we have put months worth of effort into finding the right infusion sets for him and getting his basal and I:C ratio good. Right now I am going to focus on eliminating the lows and worry about the upper end later. The biggest thing for me was her saying he needed to be 150 and if I didn't like it I needed to get over it. Since when is 110-120 bad?
Just to reiterate things you already know. There are two issues here, but think of it this way. Immediate vs. long-term.
Lows are an immediate - deal-with-it-RIGHT-NOW issue. One of the things that can result from frequent lows is hypo unawareness. Maintaining hypo awareness is extremely important for CWDs. Lows, even mild ones can also rob diabetics of hours trying to recover both physically and mentally. Lows (as you know) are just bad all the way around.
The effects of high BG is more long-term. In general, being mildly high is less dangerous than being mildly low.
In addition, having spent a lot of time in the 300s, might mean that BG in the 110 - 130 range could feel like a low. I know when I started on MDI after spending too many years in the 200+ range, that 120 was full-on hypo symptoms for me.
So the doc is focused on solving the short-term immediate issues first, while you are looking for a more textbook solution (70 - 120). How about a bit of a compromise (85 - 135)??
Remember, this is truly a marathon. You have been doing a wonderful job so far - keep running steady and be careful about sprinting ahead.
Mike, you are the voice of logic :) I am actually happy with his high numbers. They are in the 110-120's. I think the doctor may possibly feel that by increasing his higher numbers to 150 will simultaneously bring the lows up as well. In my stubborn thought process I wonder where does it end? If 150 is ok and 155 is close to 150 then is 155 ok also? Well 160 is close to 155 so is that also ok? If we agree on numbers that are at the top of in range and go a little over then there really isn't danger. If we settle on numbers that are already a little high what happens when we go above that? I prefer lows only because they are easier to fix. Feed him and he comes up. Lower his insulin and he stays up. It's an immediate solution. Fixing highs not so much. It takes hours to bring him back down and days to get the insulin right to keep him from being high. Don't get me wrong. I don't like extreme lows but 65 is easier to fix than 300 so it worries me less. The doctor doesn't have the same personal, emotional investment in my son as I do but I know she is looking our for his best interest. I hope if I can show her numbers closer to the 80-130 range she will be comfortable with that. I have spent 28 months trying to manage D in someone else's body. I can't feel what he feels so I try to keep him in a safe range. He's never needed glucagon or had an extreme hypo incident. I'd like to think I'm doing something right....I don't have a medical degree. What I do have is 2+ years of 24 hours a day hands on experience dealing with D. I probably have more hours in than his doctor does! I do need to be careful about sprinting ahead. I feel like if I can stay one step ahead of the D it can't catch me by surprise. We all know how well that works.
me too only 70's at home and if doing nothing, even then i'll eat a few jelly beans. i don't like 70's. i think for a child it's worse because they're so active, too. drops in the middle of the night aren't good. i'd strive for 90's and nothing lower, if you can...easier said then done, as we all know. again, would highly recommend a CGM. I certainly wouldn't aim for 150's though. Not sure how old your son is but I do believe they have different ranges for young children.
I agree with everyone about the lows although I feel ok in the 70's. But if I'm dropping I will eat something in the 80's even- just a protein snack. But I'm not a child and I can probably safely go lower since my bg was always on the low end and I think I still have some insulin production. I have been a lot more careful about lows lately though and I take snacks to try to avoid them when active. Sometimes it is unpredictable for me though. I would not run as high as 150 but many people do run there due to lows and feel ok. I think if you keep in 90-130 he will be fine. I also agree if you try to stay 70-120 all the time you it will probably be too stressful. I think you are doing great with adjusting to the pump, that is great!
150 is not all that high. I think it is prudent in the time being to try and have the blood sugars be a bit higher while you try to work out the basal/bolus kinks. Trust me, your son is going to be fine if you have his blood sugars a little higher for a month or two. After a while, you'll start to really figure out this pump thing and you can bring down the sugars again. It's better to be safe than sorry, so in this case, I think your doctor's advice is very prudent.
Also, keep in mind that an A1C of 7% is an average blood glucose of 154. While it would be better to have a lower A1C if you can do it SAFELY (i.e. not having lows all the time), having an A1C of 7% for a month or two isn't going to make a significant difference in the future of your son's health.
I totally agree that your doctor was wrong when she said, "Just get over it." That's a very bad thing for a doctor to say to an obviously loving and hard-working mother! See my comment below about my general opinion about the blood sugar number itself. 150 may be too high for you, but maybe shoot for 120 or 130? Those numbers, while not in the normal range for normal person, are essentially in range for a diabetic. I must admit that I don't panic when I see 150 or even slightly higher, as my A1C's are always below 7%. I'm concerned more with keeping myself from going low in the middle of the night because I fear one day I won't wake up and that will be the end for me... which is really scary.
Anyways, I'm sorry your doctor's attitude about the situation was so poor.
I like to use a narrower target than something like 70-120. Currently, I use 85-90 so, if it's more, it will keep the gas pedal down and if it's less, it will cut the bolus a shade. A broad target seems likely to engender broad results and I think that those type of targets don't provide useful practice the way a tighter target does. Maybe 90 or 100 would work but provide a safety margin you can use? I would be suspicious of a goal of 150 doctor. Not that 150 is "bad" but that as something to shoot at, it might be a bit high.
Sarah, my son is 10. Our insurance doesn't cover CGM but when I can afford it on my own I will get one. It's rare for him to be that low during the night. Most are in the middle of the day. If he's under 100 at bedtime I give him a snack and check him 2 hours later to make sure he doesn't drop down again. If he's under 70 I recheck after 15 minutes to make sure he came up high enough. If no, he gets another snack. If yes, I still recheck after 2 hours.
Thanks, Alycat :) I think I shocked her so much when I said aiming for 150 was not going to happen that she spoke before thinking. Even though we discussed treating lows, I feel like the doctor doesn't understand I don't ignore them! I would never, ever, ever let him stay low. EVER. I think the doctor is so fond of 150 for safety reasons and used to parents agreeing with whatever the doctor says that someone like me threw her for a loop. I've sent him to bed at 85 once just to see what would happen 1-2 hours later and his numbers went up. I checked him every 2 hours that night and he increased to a high of 130. I don't usually let him go to sleep at 85 but I needed to see what would happen. Normally I would not send him to bed even that low let alone 65.
Thanks, meee :) I am not trying to be unreasonable. I just feel if he can safely be 120 why does he need to be 150? The doctor thinks he can't be safe unless he's 150. During the day he usually only checks at mealtimes but that's usually every few hours anyway so if he's low it's time to eat and his pump reverse corrects. I thought after 28 months he would be out of the honeymoon phase but looking at his insulin needs I think he still has some insulin production. The doctor didn't bring this up and I didn't think to. That's something I need to address at his next appointment. It's harder to pinpoint doses when your body is still doing its own thing. I would understand if the conversation had been focusing on eliminating the lows but she's talking about doubling his BG levels. Doubling anything seems a bit extreme a move. I like to move more slowly. I will check his blood sugar every 2 hours all night forever if needed. Making such a drastic increase all at once seems too much to me. He's never run 150 so I don't have any idea how he'd feel either.
His A1C is 7.2 and the doctor wants his blood sugar higher. That seems counter productive to me. In order to raise the lows, his insulin doses need to go down. Why can't I lower them enough to eliminate lows but not bring him all the way to 150? That was really my main question. Why 150? 150 may be expected when you have D but that does not make it good. 150 is passable. I am easily able to keep him under 150. He is sensitive to change so small dose adjustments make a big difference. I can change his basal by .1 and his numbers go up. Maybe she didn't realize he's new to the pump so we were still on a learning curve? I've changed his doses myself and he hasn't been low since. He's also not been anywhere near 150.
Acidrock, Thank you for making me feel like I'm not crazy. Of course I want my son safe. That should be a given. I just don't see why he has to be 150 to achieve safety. 120 is perfectly safe. I have never sent him to bed at 120 and had a hypo incident during the night. Since I've adjusted his doses he's been as low as the upper 70's and as high as the upper 120's. 79 during the day when he's most active and 120 in the morning and at bedtime. I don't consider that range as anything that is an immediate danger to him. And usually it's more like the 90's to 120's. His doctor was so focused on her preferred 150 that I didn't feel like I had the option of anything less.
It sounds pretty reasonable as long as junior is on top of it and, from everything you’ve said, he is. I think too that it can be useful to think in terms of being flat rather than “up” or “down”
In defense of our Endo, she does not seem crazy ;) She is just very different from our previous doctor. Since we moved to a different state and this office is our only option we are making the best of it. We have only seen her 2X, in October and now in January. I'm sure as more time passes we will get more accustomed to her ways and she to ours. If not I'll commute from California back to Las Vegas where our previous Endo is! I DO NOT want to be the crazy mom that the whole office knows about lol. I want a solid working relationship with my son's medical team where neither I nor they feel pressured to go along with what the other party wants. I hope if I am ever in the wrong she calls me out but I also hope that we can compromise on our joint effort to keep him as healthy and happy as we can. I am sure we all feel the same whether it is you personally dealing with D or someone you love. I know 150 is not life threatening. I am just stubborn enough to want to keep him as close to non-D numbers as I can!