Being in and out of range.

When my daughter was diagnosed they told us that they would like her to be in range, the range they gave us was 4 to 7. She tends to be there most of the time but I would say she is either higher or lower than that about 5 times a week. Is that average? She even went a while being over that range for a few days then finally coming down again. I am realizing that Type 1 is such a balancing act. How fast can you be in DKA with higher numbers? I realize the range is for perfect glucose control but in realty it can be hard. We still experience highs and lows since diagnosis.

 

Because the tools we have are imperfect, we as parents cannot expect to be in range 100 percent if the time. A beta cell reacts in near real time to glucose levels that it senses with a high degree of accuracy. We estimate the amount of insulin we need based primarily on carbs, but there are many other unknown/unmeasurable factors that influence the glucose levels, and thus the insulin needs of our kids. We also are disadvantaged by the fact that insulin we inject doesnt start working immediately and sometimes hangs around longer than we sometimes intend.

So the standard of care is a rough approximation of what beta cells do. So deviations are expected.Our job is to keep our kids a1c less than 7.5 according to the ADA. It is a battle fought daily. It sounds like you are doing great!

If you are using MDI and dont miss the daily/twice daily basal injection (Lantus/Levemir) the chances of DKA are remote unless your child has a stomach bug (always have to be very careful with stomach bugs). If you are checking often you will correct highs within hours. If the highs are stubborn the various ratios and the amount of basal insulin are adjusted. Now that you have been at it for a few months some if the books that were originally suggested to you might make alot more sense. Its like reading the rules to a game after you have watched people play a few times.

 

Thanks for the reply. She takes Lantus once a day and I thought that was supposed to keep you safe..that's what I was told anyways but she still gets highs often, lately she had 2 numbers in a week that were 17 which is quite high but she took a correction dose. I re did the 2 hours post meal test to see if it was a carb/ratio problem but it didn't seem to be..who knows. We test often so if she is high we act on it immediately. I have heard of the stomach flu being a challenge with diabetes..so not looking forward to that. I was told you could be in DKA after one high number reading which I find odd since my daughter had probably 6 months of high readings before being diagnosed and she did have key tones starting but not enough to make her sick.

 

I believe it has been suggested in some of your prior threads, but you really should buy and read Ragnar Hanas' book. Any recent edition will do, it need not be the newest but it's a cornerstone book in any Type 1 library and will answer all these basic questions clearly and authoritatively.

 

Everyone is going to be out of range sometimes. That's one thing I wish they had told me when my dd was dx. They made it sound like if you do this and that then you'll get these numbers and when it didn't all work out perfectly I blamed myself. There are a lot of variables that we can't control. You do the best with the ones you can. Absolutely read books, read on
This forum, educate yourself. But the numbers will not be perfect, especially in a growing kid.

 

I wish we were in range that much. My DD is 14 and especially at breakfast, even with a 1:5 ratio, she still often shoots up well into the teens before she comes down before lunch - and that's with a 45-60 minute pre-bolus!
I think having a CGM shows us so much that we didn't see before.
She is on Levemir - 3 times per day because we found that two injections would not last 12 hours, and if I increased the dose, she would head low. We too are thinking of trying Lantus instead. Maybe it will make our numbers better too.

 

This is the reality of trying to be a substitute pancreas. Our team told us at diagnosis to shoot for being in range 75% of the time. Even that takes A LOT of work to accomplish.

 

Thanks again for the replies. I agree I wish they told me at her diagnosis what to really expect with diabetes and the actual ranges because i always panic when she is out of range. I too was made to feel that there is no other option but to always be in range. I know that there is a lot of books that were suggested to me but I am really bad about actually going out and getting them. I also have a 15 year old daughter who has a mental and physical disability, so time is precious. I wonder about splitting her Lantus does in two as it really does not keep her safe all the time. We also made the switch from NPH therapy to MDI and I think its actually harder because I never know if she really boluses before every sinlge carb that goes into her mouth. She is 17 so I can't be there all of the time....its hard for sure, but at least we know what to do and who to call if we need help.

 

When my son was on MDI, we generally only corrected at meals or if he was really high. Since starting pumping and using the CGM it has been much easier to keep him in range, but we still have days where nothing seems to work as it should, but we just deal with it and move on. Yesterday he fell asleep on the couch and was alarming at 70. Checked and he was around 170. Corrected, but that didn't do anything. I let him go until he woke up and he ate a snack and corrected and was fine throughout the night until around 3. Dex was showing almost 200, checked and he was 150. Recalibrated, corrected and he woke up good this morning. Hang in there and don't beat yourself up.

 

If you're not going to read it, then at least get the Type 1 Diabetes look by Ragnar Hanas and give it to your daughter. Someone in your household needs to inform themselves so that when the honeymoon ends she doesn't crash and burn.

 

Seriously? Your daughter has a chronic, complicated medical condition. We offered up an easy to read, well indexed, basic reference book on managing said chronic condition and you are too busy, "bad" about going to the trouble to invest in a copy? Good luck with that.

 

Don't be too hard on artgirl! I suspect that most of us don't really know what it's like to have two different kids with different conditions that both take a lot of time and energy to care for. Another element is that she's 17; most 17 year olds I know aren't really interested in what their parents have to say. It's probably a lack of emotional energy/space for this info, more than lack of physical time. Don't forget how draining diabetes is in the beginning.

To art girl: do the best you can. Trying to manage diabetes through a teenager (meaning, you can't control them, you can only support them and hope they listen) is tough! It's definitely different now than when he was 8 or 10. It sounds like she's doing well. Try not to worry too much about the highs and lows. Not that we are the best role model, but....my 14 year old has high and lows ((above 200 or below 70) nearly every day. His a1c is under 7 and his endo says he's doing a great job. I look at his dexcom graph and feel embarrassed or discouraged, but endo looks at it and says it looks great. Your best is all you can expect yourself to do.

And as for having time for reading diabetes books, the good thing is they are usually organized in a way that you don't have to read it cover to cover. You can find the section you have questions about and read only that. Perhaps if you have the books at home your daughter will be curious and look through them (as long as you don't ask her to read them. . She is old enough that she can take ownership of her body and life, although she will still need support from you. you can check to see what your local library has, to get a good idea which books are worth buying, which are not, if that is a concern.

Best of luck!!!

 

No kidding! From a prior post, it sounds like she has a rocking A1C, and she's only out of range five times a week? Seriously, I probably wouldn't be reading books either! I have read an entire shelf of books about T1 management and I spend hours a week thinking about it, and I've never come close to the kinds of results that she's posting.

 

Sorry, but I have to agree with Wilf and Sarah. My daughter has always had "award-winning" A1c's and amazing time spent in range. Didn't stop me from getting the best diabetes books and reading them cover to cover. Several times. It doesn't take a great deal of time or effort to go on Amazon, order the book, have it delivered directly to your door, and read a few pages a day. How can you as a parent not make the time to educate yourself as much as possible about how to manage your child's disease? Only one book, the Hanas one, would place Artgirl light years ahead of where her current knowledge base is. Knowledge is power; power to manage our children's T1D as best as we possibly can.

 

Please...i am not a child and i don't need to be told that i am not educating myself on my daughters condition. Just because i didn't read the books you all mentioned doesn't mean i didn't read ANY books. I have 2 daughters that now have medical conditions and one with both a mental and physical disability and you better believe im on top of them both. Thanks to those of you who didn't judge me for asking a question. I am who i am...not perfect but a pretty darn good parent.

 

Artgirl, you are doing great! The early stage is hard, I remember freaking out when my daughters numbers were high and thinking that we must be doing something wrong. After awhile, you get more of a feel for the type variability that unfortunately you will experience even if you are doing everything "right"

I don't see how the original post is a "look it up in a book" kind of question. Sometimes I know I can find the answer to something if I google it or look it up easily enough, but I just like the feeling of reaching out to people in a similar situation and getting the emotional support that goes along with that. I feel like that's the point of a discussion board., people shouldn't feel judged by what they don't know, we are all on different phases of this journey.

 

These questions suggest to me that she needs a reference book. (and a signature)

 

Being in range 100% of the time, everyday of the week, is rarely possible--expect the unexpected and expect imperfection. Also, remember that because she does have a period or time of the month that her blood sugars will go out of range for maybe a few days to a week during that time. Second question, DKA cannot happen (or rarely happens) because you were high for 2 hours. There is a combination of factors that need to happen for DKA to happen, but being out of range for 2-4 hours because they had pizza won't be the cause. Being without insulin or being sick is a more likely reason. A blood ketone meter or even urine ketone strips can be used to judge the urgency or concern.

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I think some of us are forgetting how it felt for their child to be diagnosed or why they even came to this board. Try to remember the first year and having all this information, in pamphlets, books, forms, etc. and wondering how to sort through the information. How many times did you call the doctor over something that you now know is insignificant? How many times did you just want someone to talk to directly or to answer a question specific to your child? People don't come to this board because they have all the answers or because they already have the strongest, most knowledgeable support group, everyone is here because they had a question or because there was something that they didn't quite understand. We come to learn, we come to share knowledge.

And for those that are thinking that "I read everything I could get my hands on", did you understand all of it or did you ask questions? For those thinking, but "her questions are basic", we all thought how many carbs to treat a low was a basic answer but we learned that 15 carbs is not always the answer. People don't always learn best by reading a book, some people need more conversation and dialogue. If she doesn't want to buy a 400-page book, that's her choice and she shouldn't be judged for that. There wasn't a rule when registering for this forum that you must read Hanas before you can ask a question (no matter how simple). Give your suggestion, but don't assume that her refusal to immediately accept it means that she won't later revisit your recommendation. Meeting people where they are is important.

At least she is trying to learn or she wouldn't have even posed the questions.

 

Am I reading those numbers correctly? 4-7 is roughly 72-126. While DKA involves far more than just high blood sugars, you're in almost no danger with the kind of numbers you seem to be talking about unless there are underlying conditions and ketones. DKA is more than just high numbers. That range is basically non-diabetic range and it's almost impossible to be in all the time. So yes, if your child (and how old would be good to know, how long diagnosed would also be good to know) is staying within that tight of a range all but 5 times a week, then you are rocking diabetes and have nothing to stress about.

 

Absolutely agree with this! I have a friend with a young child just diagnosed two months ago. I told her this was a place to go to right away as it was a safe place to go because people there "get" it. But this thread has made me rethink that suggestion. As my teenagers like to say, "Stop judging!" None of us has walked in the shoes of another. We've been walking this road for two years. I would love to get that book. But we are on an extremely tight budget (DH's job was eliminated thanks to Obamacare) and purchasing gluten free food and T1D supplies for our Celiac diabetic child, as well as counseling for our child who suffers from depression and cutting, has been deemed as more important than a book that isn't exactly affordable for everyone.