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2 months and still #s all over!!!

Discussion in 'Parents of Children with Type 1' started by nmco123, Mar 5, 2010.

  1. nmco123

    nmco123 Approved members

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    Hi everyone,

    Is this normal? Colin has been on insulin for 2+months now and we still have no idea what his # will be at any time of the day. For example yesterday at lunch he was 49 and the day before he was 301! And, same routine, same insulin same snacks, etc. He is on Humalog and NPH 2 mixed doses a day. But I mean, C'mon when is it gonna regulate? Im so nervous about constant highs and worried about low lows!!! Endo says it takes about 6 months to regulate on this regimen??? Any thoughts?
    They said maybe in a few months Lantus may be an option for us, but involves more shots :(

    Thanks!!!
     
  2. BrokenPancreas

    BrokenPancreas Banned

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    Why not Lantus now?
    I thought NPH was hardly over used anymore?
     
  3. nmco123

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    Well, im not sure actually....we dont have an appt till april and they dont seem concerned. they start all thier "new onset" pts on nph and humalog. he barley gets any humalog at all. just like a 1/2 unit depending on bg
     
  4. danismom79

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    NPH can be good, but it's not for everyone. We used it for a year and a half, and I miss it every now and then. But regimens evolve. I'd be wary of any endo that gave me a specific time that my daughter's diabetes would "regulate." There's no reason not to switch him now if you're having trouble. Yes, it involves more shots, but so will your current regimen at some point. You can only get so far on 2 mixed shots a day.
     
  5. Yellow Tulip

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    My son Tommy was diagnosed recently, too, and we started on Lantus right away. I actually asked my endo about NPH because for a while it seemed like it would fit better with his nighttime highs, but she said that they no longer do it. I'd ask your endo to put your son on Lantus.
     
  6. saxmaniac

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    IMO type 1 will never "regulates". Hate the word. It implies D can be solved, which it cannot. We do get better at dealing with the highs and lows, but they don't go away completely. Now, if there's a 300 or 40 every single day, there's room for improvement.

    I'd look into getting off NPH. Yes, it means more shots. I quickly learned that the shots are the easiest part - the hardest part, is difficulty of predicting where the numbers are going to be. That's what drives us insane, not the pokes that they quickly get used to.
     
  7. kim5798

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    Do not have some idea in your head that you are going to get to a point where the child will just be in range with the doses you provide. You will drive yourself crazy. Even with pumps & cgms....there are highs and lows, sometimes for no apparent reason. It may level out somewhat, but my child has had diabetes for over 8 years. She is on a pump. Yesterday she had mostly in range #'s....but one 59, and this morning, a 301. Just an average day in my life.

    kim
     
  8. denise3099

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    I don't know anything about nph--I once asked endo about it and he said he hadn't prescribed it in 10 yrs.

    I do know that if something isn't working, try something else. Your son may be honeymooning, but that generally protects from super highs and lows. It just sounds like your regimen is not enough for him. Ask about lantus.

    Also, ask about insuflon and iport, 2 infusion sets for mdi. I haven't had the opportunity to try them myself, but really really wish we had. It will save your son hundreds of shots and make compliance lots easier.

    http://insuflon.com/insuflon.html

    http://www.i-port.com/
     
  9. Becky Stevens mom

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    We also started on NPH and humolog mixed when Steven was first diagnosed and went on to use it for 4 years. Some things to remember about NPH, it has to be mixed real well before drawing out with the syringe so I would roll it in my hands for a good minute. We had to be very precise in our eating schedule. Steven had to have breakfast, snacks and other meals at the same time every day. I would sometimes go a few minutes late or early but being anal retentive anyhow I was pretty exact;)

    alot of times activity will bring #s low sometimes very low even hours after. So if your son is going to be active you could cut back on the amount of fast acting insulin youre giving him and also cut back on the 2nd dose of NPH so that he doesnt have delayed hypos at night. When does he get dosed for NPH? What is his dose now? Another thing that can change BGs would be the type of food eaten. Fatty foods tend to stick around longer and cause spikes.

    Using lantus does mean more shots but the fast acting insulin is given in an insulin pen, the pen needle is very tiny, smaller then the syringe needle even and Steven doesnt even feel it
     
  10. LittleGuy'sMom

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    Hi Nicole, we've only been at this for a little over 3 months and my little guy's numbers are all over the place, too. Mostly highs but some lows, too. We do mixed NPH and Novolog before breakfast, Novolog at dinner and Levemir at bedtime. If necessary, he'll get corrections at lunch and/or bedtime. Like you, we never know when NPH will start working. Some days it seems like it doesn't because A is high all day long. We tried doing MDI for all meals and snacks but A just started freaking out every time he saw the syringes so we went back to NPH so that he wouldn't be getting injections all day long. I don't know why your endo wouldn't have you on Lantus right now, though.
     
  11. Christopher

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    I also don't like the words "regulated" "controlled" "stable" "normal" etc....but you will hear people use them a lot. If your pancreas is not working it will be very hard to ever be any of those things. That said, I always strive to get her in range and keep her there as long as possible, within reason. I think if you really work hard on counting carbs, weighing and measuring all food and liquids, keeping great notes on food, insulin and how the two interact, you can manage this illness better. Other things that can help are (if you are not on NPH), experimenting with pre-bolusing, meaning giving insulin 10-30 minutes before eating the food so that you attempt to reduce the spike that can happen when the food starts acting on the bloodstream before the insulin does.

    It really is a lot of trial and error and you are in the very early days. Things will get better for you as time goes on. Good luck.....:cwds:
     
    Last edited: Mar 5, 2010
  12. VinceysMom

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    We are just over two months as well. We do Lantus in the evening around 9:30 pm and Humalog with every meal. I think each child is such an individual case. We have a great team of Diabetes educators; I call in numbers once a week and more if needed. Then they help me to make adjustments to the insulin... I say you need to talk with your Diabetes team, and not wait until April. Good luck, I know how difficult this is for you and your family. Also, read read read... I try to read as much as possible to educate myself and my family. There are sooo many books out there to read...your local public library probably has some, and if you get on line with your local public library you can most likely reserve books online from other libraries within your system. Best wishes.
     
  13. Christopher

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    Great advice.

    Here are some books you may find useful:

    The "bible" of childhood diabetes, Understanding Diabetes (aka The Pink Panther book) by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
    http://www.uchsc.edu/misc/diabetes/books/ud11/ud11.html

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin [ILLUSTRATED] by Gary Scheiner, Barry Goldstein

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace, Second Edition by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover. US$16.95.

    Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers by Ragnar Hanas, M.D. Published by Marlowe & Company, New York, 2005. ISBN 1-56924-396-4. US$34.95.
     
  14. jcanolson

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    I spent the first year or so after her dx wondering what I was doing wrong because her bgs were all over the place. They made it sound so easy in the hospital. "You check bg. You figure the carbs. You give the proper amount of insulin. You get bgs in range." I thought I was a complete failure until I found this site.
    Diabetes does not fight fair, and the pancreas is a very intelligent organ. I make a poor substitute. It will get better. As you work with your endo team and learn, you will be able to better anticipate problems, but you have to have an endo team that partners with you. Honestly, we are happy if 70-80% of her numbers are in range for the week.
     
  15. nmco123

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    Thank you all so much for your advice and concerns. I am (was) happy with our regimen of NPH and Humalog. Lantus or a pump seemed so far away at dx. Still they say he is on too low doses for a pump (and I dont think he wants one) He's very good about shots and dosent complain at all. If we do switch to Lantus my concern was no school nurse 5 days a week, only 2. So thats frustrating! Who's gonna do it??? Im sure the school district has to provide someone, right? Our thoughts are try Lantus over the summer when he is home and get him used to extra shots. We are on 2 MDI now originally it was 3, mixed in the am, humalog at dinner and nph at bed. However they changed it bc he was having trouble waking up in the morning for school bc he was staying up so late to have a snack. Also, his 2am's were so high. So now we mix nph with the dinner humalog. HE is getting 5nph in the am and sliding scale humalog based on bg (not carbs) usually its 1 unit or 1/2. dinner its 2 nph and same sliding scale.
    Some days we are 90% in our range of 80-180 but others are a mess like solid 200's across the board. And they do make insulin adjustments, then he goes low then they change it again! uggghhhhh! So frustrating! I do have some books, and I do try to educate myslef as much as possible. I understand every child is different and this is diabetes, and I hate it. Thank you all so much, my support team :)
     
  16. PatriciaMidwest

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    I could have written Carol's post. We are two years after diagnosis now: we went from the honeymooning phase right into puberty and nothing is predictable for long. My endo's office gave me the same simplistic plan as Carol's did -- check bg, calculate carbs and dose and all will be well. It's not quite that simple in many cases.

    THE GOOD NEWS: I found this site just this passed week and have learned that I'm not alone in my struggle. I was at an all time low when I found the forum: Frustrated with not being able to maintain good numbers, Frustrated with my Endos office who gives me the same canned response every single time I call in our #'s, etc. and I felt like I had failed DD. I'd like to save you from this if possible. Fortunately, there is so much good information here from people that are living this disease 24/7 just like you and your family.

    I finally have realized there may never be a consisent "pattern" to DD diabetes, but I am learning new things to try to help manage whatever pattern shows up. My new motto is: The pattern is there is no pattern.

    Keep reading and follow your Mother's intuition.
     
  17. Becky Stevens mom

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    Im so glad you found us Pat and so glad you find us helpful. I have always found that too when talking to the endo or CDE. They almost scratch their heads and say " gee, damned if I know what you should do" It took me some time to be able to just say " ok, guess I wont bother calling and see if I can get this figured out myself" With CWD though I dont have to figure it all out alone. Lots of heads are better then 1
     
  18. JJsMomma

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    So stressful! He could also be honeymooning. JJ was on Humalog and Lantus from day one...we love it. We recently split the Lantus to 1/2 in the am and 1/2 in the pm. We don't have to give him more shots as we mix the 2 types of insulin in the same syringe. I know some endos are against mixing the Lantus and Humalog and it also states that on the website for Humalog however, when I questioned our endo team, they said they ran tests and it didn't alter the efficacy of it. We do give him 6 shots a day (after each snack/meal), however I would rather that and have stable numbers then always be guessing and worrying about where the numbers will end up. We've also had good A1cs, so I'm comfortable that it is working for him. Talk to your Endo team....you have some input in the whole thing as well. Best of luck!!!
     
  19. mph

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    :D Sorry, no disrespect intended, but I had to laugh when I read the title! It's been nearly 4 YEARS and we have days (sometimes WEEKS) with #s all over the place!:) That's D! It's frustrating, but you'll get the hang of it. Just don't expect perfection.;)

    So many things affect bg other than insulin. Keep at it and keep asking questions here. There is a wealth of knowledge from the experience of all these parents who deal with the same things you are dealing with.:)

    FWIW, things got better and better for us as we transitioned from NPH to Lantus, Lantus to a pump, then added a CGMS!:D

    It will get better.
     
  20. lisamustac

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