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does it ever get stable?

Discussion in 'Parents of Children with Type 1' started by tina, Dec 19, 2011.

  1. tina

    tina Approved members

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    My little boy was diagnosed in June of this year and is four.

    We test about six times a day, once at night, and treat after each meal. We will also treat at night if he is over 210 at his 1 am test.

    Slowly his AC1 has been dropping and his ave BS is about 200.

    However it just seems on a daily basis that we are all over the place with BS. Anywhere from 270 in the morning to 45 some afternoons-like we are playing a game of ping-pong.

    Sometimes we can see it looks like a bit too much insulin, thus will decrease the compenastion dose, only to see he start running too high...sometimes it seems linked to excercise or illness, but other times, I dont see any clear correlation.

    Some days are just fine though.

    The endocrinologist didnt say much when I asked if this much variability was common-I would have liked her to say yes or no, and give me guidance about what we are doing wrong.

    Is this sort of variability normal?
     
  2. Ndiggs

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    Yeah, its pettry common I think. We have the same thing in our daughter, it was worse I would say the first 3-5 months after DX and the pump helped calm it a lot, but there is so much going on in their little bodies that these swings are normal for awhile
     
  3. jamierb

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    My daughter was diagnosed 3 years ago & she still goes high to low & back again almost every day (or at least it seems). I'd say I count carbs almost perfectly 90% of the time. But sometimes certain foods take longer to raise bg & the insulin works faster (or she is unexpectedly active) & then she will be really high at the next meal because she had glucose tabs & food to get her up quickly. And sometimes she will tantrum or get a cold & then it goes up even if she gets the right amount of insulin for her food & bg correction. Most of the time, it doesn't make sense at all! Sometimes I just have to go in another room, take a deep breath & tell myself that I'm doing the best I can do. She is on a pump now & her numbers have been better but still all over the place. Her AIC is now 7.1. Doc says what's is important is that I react to whatever her blood sugar is & get it in normal range quickly. And that's what I've been doing.
     
  4. Becky Stevens mom

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    I think it can be pretty variable, especially during the honeymoon period. Some days the ole pancreas really seems up to the job and will pump out all kinds of insulin which can lead to low blood sugars, other days, it decides to take the day off which will lead to high blood sugars.

    When you say you treat after each meal, does this mean that you are bolusing for the meal after its eaten? That may be causing some of the high #s youre seeing as the food is already in there and being digested before the insulin has a chance to start working itself. If you can prebolus for most meals you wont see that spike afterwards as much. High #s in the morning may mean either not enough basal insulin or a growth spurt. When my son was that age he seemed to go through growth spurts every other week which would really throw a wrench in the works:rolleyes: And during this time of year in areas where the weather is getting cold it makes for less activity for many kids and the weekly cold viruses too
     
  5. Butterfly Betty

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    Like the others said, it's pretty normal. There are so many variables that come into play when asking for a why.

    Somedays, we have pretty consistent numbers through the day, others we're all over the place. In time I've learned to take it one number at a time.
     
  6. Beach bum

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    What you are seeing is pretty normal, especially in the honeymoon phase of diagnosis. All I can say is chart everything, blood sugars, food eaten, insulin given. This will help your team figure out the best dosing plan for your child.

    The endocrinologist didnt say much when I asked if this much variability was common-I would have liked her to say yes or no, and give me guidance about what we are doing wrong.

    That's because they can't since there really is no yes or no answer here. For some it is yes, but others it's no. There is a great saying here on the boards YDMV. Meaning your diabetes may vary. What works for one, doesn't for the other and no two people are alike.

    The logging that I mentioned above will give the doctors the info they need to give you guidance in making changes. You aren't doing anything wrong (from what you've written), it's diabetes playing it's stupid games.
     
  7. L101418

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    I cannot define "stable" when it comes to T1D. My younger daughter is starting puberty and sometime I feel like I'm hanging on by just my fingertips. Yes, my girls' numbers can be all over the place. It was hard for me to accept that I couldn't make the numbers perfect, but when I did I felt better. I try to find the sweet spot between accepting I can't make it perfect and always striving to do better. Because the act of striving will result in progress, how ever small.

    Someone (maybe on this forum) once shared that we should be grateful for the numbers. This helped me tremendously. I tell myself almost everyday

    "I'm thankful for the numbers. The numbers tell me what to do."

    Now, of course, some numbers get a special name assigned to them but I keep those to myself.
     
  8. Mommy For Life

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    Fellow ping pong player here! The D honeymoon phase is not full of love and romance! :rolleyes: I just do my very best to look at the number and not freak...especially when we had our 1st major low yesterday 45!! :eek: our motto is test, treat and move on. As long as I am keeping the numbers from being too high for too long and bringing up the lows this ping pong pancreas mama is is doing her job as best as can be expected! ;) Hang in there!
     
  9. nanhsot

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    It really depends on who you ask. I do know folks who claim they are "stable". I would personally love to stick a CGM in them and watch how things fly, because in delving further you find that they test only a few times per day. Once you are out of puberty and/or truly have your basals set, it's possible to see "stable" numbers first of the morning and last of the night. That does NOT mean numbers were stable all day.

    The more frequently you test, the more unstable things seem, IMO. But I think frequent testing is important to understanding exactly what's happening in the body.

    My teen is a frequent eater, he eats something probably hourly. This makes numbers seem truly unstable, but his A1C is generally good, so he's managing well, even if his meter and dex average look wonky.

    We actually got into an argument with his (now fired) endo about this. She claimed that his up and down numbers were a huge problem that he had to fix (despite an A1C below 7) and she berated him and told him that it is NOT normal to have fluctuations. This forum has taught me otherwise, and his CDE reassured us as well.

    Honeymoon is a crazy time in so many ways, and what you are seeing is fairly typical. The pancreas at times decide to work, you see those lows, so you adjust the basal and see highs when they decide to crank out insulin a bit less...it's just unpredictable at times. Once honeymoon is over I do think things become a bit more...predictable? Stable is not a great word for diabetes, IMO!!

    My opinion is that what you are seeing is fairly typical for where you are in this journey. Not to say you don't have to tweak and adjust and test frequently...you do...but what you are experiencing is not unusual.
     
  10. BittysMom

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    I've been wondering about "stability" lately myself. I've received comment after comment and question after question about whether Caroline's numbers have gotten stable, or if maybe they will when she's on the pump, or they know so-and-so who has their's under control. I was going to start a thread about this because it makes me wonder if my standards are too low. I think her 7.9 A1c is too high but the CDE said is was fine- it's like conflicting messages abound.

    I know I want to manage her numbers better, but when I hear about these adult T1's with the stable #'s I wonder if maybe they just don't discuss their highs and lows with friends. Or maybe my standards are too low... See? totally with you.
     
  11. MomofSweetOne

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    My husband recently commented to me that his friend doesn't make diabetes all this work, no weighing of food, not adjusting insulin constantly. I said, "X has it easy (relatively speaking). He's a 60ish man with 40 years of experience. We have a GIRL in PUBERTY. That's the toughest of all."

    He had lunch with his friend a couple days later and reported back to me that his friend had agreed that girls in puberty are the hardest.:rolleyes:
     
  12. Amy C.

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    People ask this all the time and simply don't understand what stable is. The truth is the sugars range from low to high and we do our best to keep the sugars in range.

    Unless I want to explain my definition of stability, I usually reply my son's sugars are good enough to keep him out of the hospital.

    After awhile, folks stop asking.
     
  13. BittysMom

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    I'm at the point where I think I need to ignore almost everything I hear. Just last night I was told of an 11yr old boy who does all his care and has fine #'s. I said either he sets an alarm to check himself at night or his numbers can't be that great. Something wrong with that story... Then a fireman I'm close to told me he went on a call where a woman was found with a BG of 23 after at least an hour of being unconscious. He said it was because her pump broke and gave her too much insulin. I don't know what to make of that either. Covering my ears *lalala*
     
  14. MamaBear

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    My son is 12 and some days he does all of his care and some days I do all of it. His A1Cs are great but I wouldn't use the word "stable". :rolleyes: We have some days where the numbers are great and others where it's a WTF day. We had a 347 a few nights ago and a 282 last night, also some 60s. I think everyone's BGs fluctuate throughout the day. The growth spurts and puberty bring some pretty high highs! And anyone who claims to be in total "control" and completely "stable" especially at age 11 when puberty is about to hit, is just totally full of crap.
     
  15. NomadIvy

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    Hang in there...
    We tried to set "goals" in terms of percentages. First, the CDE and I wanted to to shoot for 0% under 60, only 10% under 70 mg/dL. So, our first foal was to avoid all the lows, or at least decrease it considerably, because they were occurring quite often in the beginning. Then we wanted to try to avoid any spikes above 200 mg/dL.

    Did we achieve our goals? Nah, not really...but we did see a big decrease in the number of lows (although she had 3 low lows in the last 48 hours - :eek:). Now the avoidance of spikes i think is sooo difficult with young ones because we want them to eat as normally as possible. But as long as we don't let them "soar" for hours on end, I think it's acceptable. To each his/her own. I'd rather avoid the spikes as I know it's better for their bodies...but, reality is, they happen.

    Managing ~D is all about adjustments. Just when you think you've solved something, another thing comes up. :cwds:

    I don't know if someone's suggested books for you to read, or if you've already read them. Christopher usually welcomes new ones with a list of books which we all learned a lot from.
     
  16. nanhsot

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    I do think that adults are more "stable" (don't like that word much!) as they are not dealing with growth hormones, puberty, intense exercise/sports, etc. I also think adults tend to have more regular and predictable eating habits as a rule.

    I may be proven wrong, but I do believe that our kids can look forward to a bit more stability in their future, as long as they keep their basals set and bolus appropriately.
     
  17. TheFormerLantusFiend

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    I don't think it ever gets to where you never see an unexpected high or low, not even for those who are mostly stable. But I do think that if you put in the work to lower blood sugar you should see an average below 200. Then again, I don't have a four year old.

    What insulins are you using?
     
  18. Kimby

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    Andrew fluctuates ALL THE TIME! I keep thinking I must be doing something wrong. My husband and I are both math teachers. I'm convinced there is no pattern! We do the best we can, analyze the numbers to find patterns when they show up, and try to enjoy life despite the numbers.

    My husband works with a man who has been very encouraging. He was diagnosed at age 7 like Andrew and said that his numbers were all over the place his entire childhood. Now, he is a healthy football coach and history teacher. He says he can go to bed with a BG of 90 & wake up at 90. I hold on to the thought that he won't always be growing!
     
  19. bnmom

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    I wouldn't worry too much about trying to acheive "stable"...but what you will get with more time and experience is the ability to more quickly determine when and how to change things to address the swings you see.

    That will help you to tweak more effectively, which in turn will help improve keeping them closer to range - or at least getting them back into it faster. And that will help their overall health. At least that's what I tell myself anyway :cwds:

    Other people have been asking me since dx if things are "stable" yet, or if I've "got it worked out" so I can sleep through the night. :rolleyes: Well meaning bystanders are a pain in the neck, but they're never going to go away so I just practice my best vacant smile and sing a little tune in my head when people ask silly questions or share scary stories.

    We also had a friend that made D look a lot easier - no measuring, no hassle, no worry. At first I thought they must know some secret I had missed, and I asked his wife (my friend) about his numbers she said "no, they're good. He's in range most of the time." The next time I asked him when no one else was around, I found out his A1C was over 13 - his wife just doesn't know cause he just tells her he's fine. So take the stories you hear with a grain of salt, because you may well not be getting the whole story. It's more common to just be getting someone else's perception of how things are, versus how they really are.

    Whatever you do, don't beat yourself up or fret too much. As long as you are trying, you guys will be just fine. :)
     
  20. Gracie'sMom

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    The variability is normal. My dd is starting with puberty hormones and her bg's range from the 30's to the 400's as a rule, although there has been an occasional dreaded HIGH GLUCOSE thrown in there, too. You just get used to it, so in that way it gets better.
     

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