- advertisement -

Those that caught the DX early, what was your regime?

Discussion in 'Parents of Children with Type 1' started by mmgirls, Feb 21, 2014.

  1. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    Seeing some mild mood swings that I think are BG related, hunger and tiredness. She has a bigger thirst and runs off to the restroom.

    Yesterday after having a treat they made for 100th day of school, 100 fruit loops necklace I decided to test her. BG was 217, this am fasting was 80.

    In December, had my older daughter endo do an A1c it was 5.8. Today I called and talked to them about what was going on and and what can be done with such an early DX. They advised me to glucose load her and bring her in for an A1c, and do a 1and 2hr bg.

    Loaded her up with 75 carbs and showed up at the endo. 1 hour Bg was 151 and a1c was 5.7

    No DX, but we know that that is not a normal number. We left and shortly after we got home did a 2hr it was 168, again not normal.

    I feel better knowing that her a1c has not risen and is holding. We thought back in April that she was going to be DX thru TrialNet, since she had a lab draw of 205, but on confirmation she did not go over 200.

    I guess I am just wonder what those that caught it early did about it? Lantus for basal only? Fast acting for coverage of meals only? Just trying to get an idea. I know that there are more than a few of you out there that has been there and done that.

    We will do our next TrialNet in March and will continue to do an a1c every 3months at the endo, while we wait for the other shoe to drop.
     
  2. nebby3

    nebby3 Approved members

    Joined:
    Jun 5, 2007
    Messages:
    923
    I thought bg could go up to 200 and not be D as long as it is not fasting.
     
  3. KHS22

    KHS22 Approved members

    Joined:
    Oct 17, 2013
    Messages:
    353
    So we caught my daughter at home with BG's in the 10 range (180 ish I believe). We knew she was high risk due to 3 antibodies from trial net, but her last A1C had been 5.2. One night, I got a 12 (215ish) - and while I knew none of the other #'s were normal, knowing that this was diagnostic, I called my friend who is a paediatric endocrinologist (convenient!!). He said to bring her into the day program the next day. Well, I thought I was crazy, because we got there, they checked her sugar and it was I think 4.3!!!! He said he wasn't surprised though, as early on their sugars are often worse as the days go on, and that when they have a break from food over night, the body compensates really well.

    She stayed off of insulin for about 1 month - we just did 4-6x/day checking, also helped us to figure out her 'trends' etc.

    First we had to start dinner insulin. Then Lunch, then breakfast, and lastly basal. THis makes sense, as it is usually the glucose tolerance that goes first. For a long time, even if she was quite high at bedtime, she'd be back down to normal by AM without any basal.

    So fasting were great for a while, then before lunch she'd be like 8ish, before dinner 10ish then before bed 12-14ish. So thats why we started the dinner first - we could correct for the high, and prevent her from going higher before bed. We stayed on only that one injection/day for quite a few weeks. Then, after lunch started to creep into the 12-14 range, so we added lunch insulin as well. Lastly was the breakfast once her before lunches started being quite high. It seemed that early on in the day, she could 'keep up' but as the day went on, her sugars just creeped up.

    We tried just doing basal initially, thought one injection/day might just take the edge off of some of the highs, but it caused her to go quite low randomly, and wasn't really addressing her main issue which was glucose intolerance!

    Its both a gift and stressful finding it early I think. I was constantly wondering what next, what next. I kept asking my friend, when is she going to need insulin, when do we start etc. He had to remind me that, we really don't know. He said he wouldn't have been surprised if it was months and months until she needed insulin. But it could be tomorrow. We just don't know enough about really early onset yet. In a way, I was almost relieved when we started insulin, just felt like, okay, this is the diagnosis, this is what we have to do, lets just get on with it!

    Sorry you are going through this! :(

    Roberta, recent studies have shown that non-D generally never go above about 8 (150) - even with a large meal!

    ETA: Her A1C that day we went in after having some mild highs - was 5.8, up from 5.2 about 2 months previous. But still a decent A1C.
     
  4. eloquine

    eloquine Approved members

    Joined:
    Nov 6, 2013
    Messages:
    21
    My son was diagnosed very early, his A1C was 7.1 at DX. We didn't know anything about diabetes, no family history. I just knew something was wrong, and webMD helped in the diagnosis. We went 4 times to his doctor before she agreed to have some lab work done (theyu had a meter but couldn't figure out how it worked....!!!)
    Anyway, so when he was diagnosed, we didn't start insulin right away. We started Lantus a week after the first visit with the endo, then fast acting insulin a few days later. It was scary, because we never had someone show us on our son how to do the injection.
    They wanted us to call twice per day everyday for 2 weeks starting before he was even on insulin, just to check on his progress.
    It was nice though that he was caught so early, because we could learn and his pancreas was still giving us some room for trial and errors (a lot of errors...)

    Sorry you are going through this, again...
     
  5. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    No real advice here, just wanted to say that I am very sorry you are dealing with this.
     
  6. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    staying above 140 at 2hrs is considered impaired glucose and over 200 at anytime after a carb load is diagnostic. (lab draw)

    The problem with the above is really more so regarding Type 2, Historically we do not catch Type 1 early. There has been talk about using a A1C as diagnostic, as low as 5.7 but most likely 6.0

    My Madison has had impaired glucose for 1.5 years, last year having a lab draw during a Trial Net OGTT of 205.

    SO it really is not so cut and dry.
     
  7. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    I have known for a very long time that she is high risk, and after last years lab BG of 205 I thought that was it here we go, but the next OGTT no DX.

    She is almost 6 and you know how 6 year olds can be, they are learning and growing fast. But I can not ignore the mild symptoms that I am seeing, starving and still hungry at an hour later feeling tired and quiet, then a surge of energy a bit after an hour. Which I think are BG related. she is getting up earlier and earlier to go potty in the AM
     
  8. twintype1s

    twintype1s Approved members

    Joined:
    Jun 4, 2010
    Messages:
    99
    When Nate was diagnosed thru TrialNet, his 2-hr was obviously elevated--260-something, I think, and his a1c was around 6.0. (This is 4 yrs ago so actual numbers are fuzzy.)
    For the first 6 weeks, we just tested him at meals & bedtime. When we started seeing elevated numbers, they added on some meal boluses, no basal for a couple of months. Once we had the diagnosis, we were able to get a pump approved so we had it in hand by the time he needed insulin. He was diagnosed in early June and started insulin in late July or early August. Probably didn't require basal until Sept/October.
     
  9. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    What meal did you end up starting with? was it dinner like the previous poster?

    I am wondering if BG later in the day are higher at the beginning, and maybe after dinner is the best time to check in on BG.
     
  10. Megnyc

    Megnyc Approved members

    Joined:
    Nov 8, 2012
    Messages:
    1,373
    If I recall correctly, you have an extra dexcom receiver and transmitter. How would you/your endo feel about putting a dex sensor on her for a few days? It might give you a better idea of her blood sugars than random finger pokes. It would be an easy way to see how her behavior correlates with her blood sugar without bothering her with lots of fingersticks.

    I'm so sorry you are dealing with this.
     
  11. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    I do agree with this, but I only have 1 working transmitter, our first one died. We do have new insurance just waiting for the new cards. SO I will order a new Dexcom for my oldest just as soon as I can.

    I do plan on doing a CGM first and pumping un-tethered with her, because I think that she will not need overnight basal if we get this early enough.

    Right now I have only seen 1 number at home over 200, but the rest of the non fasting have all been creeping up. But I have had no rhyme or reason to the testing, except for if I knew she had a ton of carbs like the other day when I got the 217.

    If I catch a few more above 180 I think the endo will DX her otherwise once she hits 6.0 on an A1C she will be DX. That's if Trial Net doesn't catch it first.
     
  12. twintype1s

    twintype1s Approved members

    Joined:
    Jun 4, 2010
    Messages:
    99
    It may have actually been lunch first because his morning fasting would be fine, but then he'd eat cereal, waffles, juice or anything that would cause a spike in a T1, so he'd be higher going into lunch and I'd bolus for lunch. Breakfast was the last meal we bolused for, because I didn't put all the pieces together at that point. We were still less than a year post-diagnosis with our first and I hadn't figured a lot of stuff out yet! :)
     
  13. glko

    glko Approved members

    Joined:
    Aug 12, 2010
    Messages:
    92
    My ds was dxd through TrialNet, but he was over 400 at 2 hr post. Baseline A1c was 7.2% I believe. We started with 4U Lantus in the morning. After 1 week we added small, tiny doses of Novolog at meals, like 1/2 unit per 40gm carb. He would go hypo after breakfast with only 1/2 unit of Novolog so for a while just took 1/2 unit at noon and supper. His basal needs quickly decreased to 2units Lantus. Currently after 6months he is pumping at basal of 0.05 - 0.075unit/hr and TDD of around 6units.
     
  14. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    Was your kiddo ever DX'd with "impaired glucose" with trial net?

    Trial net has had my dd with impaired glucose for almost 18months! We have our next study visit in less than three weeks and am hoping that her mild symptoms and impaired glucose do not take off running before then.
     
  15. dpr

    dpr Approved members

    Joined:
    Dec 17, 2013
    Messages:
    399
    If it were me, with 4 markers and a d sister, I'd push the endo to call it. I'm surprised he hasn't, there's no mystery about what's happening here. A small amount of insulin with meals to keep her smoothed out and take the load off her pancreas and she'll have long honeymoon, get her energy back and be a healthy kid.

    Good luck and wishing your family the very best! If you ever on my side (Auburn) of Hwy 80 shoot me pm, my daughter, 8, likes to meet new d friends.
     
    Last edited: Feb 27, 2014
  16. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    Was it the first testing that he was DX.? Was the DX a fluke or was ther mild symptoms that made for the Trial Net?
     
  17. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    We are working towards a DX. But, since we are in a trial and will be having a study visit in an environment that she is already farmilar with, I am hesitant to push right now.

    Although I love our endo for always being their IF we needed her, we do not have her very involved, it's been a long time since we have "needed" her advice, and honestly they have never been in this situation, and I do understand their stance.

    We will be coming thru CA in less than 3weeks visiting one of my favorite spots, Monterey,before our TrialNet visit.

    PM me if you are on the way.
     
  18. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    Today she walked out for full day kinder and very dramatically fell across the outside play table and announced she was SO tired. It being early out day, I asked her what she had had for snack? She said cheese, so thought it would be a good day to test he glucoseb tolerance

    Bg after school 76
    1 hour after a 67 carb fast glucose load

    229:beaten: (is that the right face to use? )
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice