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I'm discouraged.....

Discussion in 'Parents of Children with Type 1' started by LizinTX, Oct 28, 2008.

  1. LizinTX

    LizinTX Approved members

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    I was even debating on whether to tell this or not; but I just need to get it off my chest.

    For the past three months I thought Jacob's numbers were great. It seemed like every time he checked he was pretty much in range. He checks before every meal and every snack--he is thirteen and eats a lot and frequently, so I thought he was checking frequently too. I thought we had an accurate picture of what he was doing. His averages were 123-breakfast; 126-lunch; 194-supper; 134-midnight. He does about 6 fingersticks a day.

    We went to the endo last Friday and the A1c was 10.0 :eek:, this is up from 7.9 in July.

    Needless to say we were shocked. Obviously we aren't checking enough. The thing that rubbed salt in the wound was the fact that our endo office hired a pharmacist to help our NP, and she was running the show. As soon as the A1c came back, her tone with us immediately changed from nice and helpful to condescending and basically it is all my fault I am doing this to my son.

    Then she goes on and on about the fact that he lost a kilo and that should have been my warning that something was wrong. First off I am not sure what a kilo is, I don't know the metric system that well; later found out it is about 2.2 lbs. This kid is 5'2" weighs 100 lbs and I am supposed to notice that he lost 2 whole pounds??? But because I didn't notice, she made me feel like the worst mother ever.

    So that is my sad little tale. Now we are checking about every two hours to see if we can find out what went wrong.

    I hate D.
     
  2. StillMamamia

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    :( I'm very sorry. I understand how frustrating it is.

    I think some overnight basal testing would be helpful. We had problems also and it turned out my son was having highs overnight. We found that out by doing some basal testing. Maybe this is what's happening with your child as well.
    Test 2 hours after a meal as well.
    Then you can tweak the basals and bolus accordingly.

    I'm sure things will become better.

    Hang in there.:)
     
  3. buggle

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    I'm sorry that you were treated so badly. With those numbers, I would expect a great A1c too! He must be spiking after meals or in the night. Can you get a CGM or can you get a loaner for a week from the endo's office to try to see what the pattern is? Then, you'd know when to test and what to tackle.

    It may also be that they mixed up his A1c with someone else's...
     
  4. OSUMom

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    I'm so sorry you're discouraged and that your medical staff was far from supportive. How dissapointing. Did you come away from the appointment with some things to act on - did the NP help in any way?

    Sounds to me like you guys are attentive and working diligently on doing the right things. Hang in there!!!! :cwds::cwds:
     
  5. MReinhardt

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    Besides what everyone has said. Have you checked your meter againts the drs office. Sometimes those can be off.

    One thing that I have noticed. I likes the purple One Touch Ultra mini meter. But it is not as accurate as the One Touch Ultra Smart meter. There has been a big difference in readings. So unless we are with out a meter, we dont use the mini. We have had at least three minis that were way off from our Ultra smart meter. Chell's Ultra Smart is always right in line with all of her drs labs, here in Iowa and St. Louis.

    Something to check out!
     
  6. Jacob'sDad

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    I don't believe the A1c is correct. An A1c of 10 represents an average BG of about 275.
    So let's say the average of the BG checks you did do was around 150. That would be 125 points below 275. That would mean that there would have to be an equal number of checks that you missed that averaged 125 points ABOVE 275. Do you really think that you were missing a whole bunch of BG checks around 400??? I doubt it very much. I would ask them to redo it.
     
  7. Tigerlilly's mom

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    I have to agree - have them do it again!!!

    Sorry that they were not supportive:mad:.
     
  8. Pammers

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    Pardon me for intruding, but.....

    Does anyone think its possible that there was a wrong a1c reading? Joey has rarely had perfect numbers (he is kept higher during certain school times and of course there are the regular old highs that pop up) and I don't think he's ever had an a1c above 8.

    I'm not sure what an a1c of 10 equals but im pretty sure you'd have to be averaging around 250. Based on what you're saying, the math doesn't add up.

    And shame on that lady for treating you so badly!

    Hang in there.
     
  9. momtojess

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    I am sorry she was condenscending to you..Like you wouldnt feel bad enough.

    A few things cross my mind

    Are you sure he is checking, or is her telling you these #s? I only ask this because of his age, and I know kids can do this.

    Is he going through puberty? I know that can do crazy things to blood sugars.

    I would ask then to rum the a1c again as it doesnt match the meter anywhere close.

    What about a trial cgm for 3-5 days so you can see a very accurate picture of what is going on inbewteen the finger sticks?

    Do you test overnight? if not, that may be where this is coming from. Maybe do a night of basal testing.

    What suggestions did the endo make?
     
  10. hawkeyegirl

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    When I use an online calculator, a 10.0 A1c is equal to an average blood sugar of 274. That is far enough off from what you're seeing as a meter average that I think some further investigation is in order. ETA: I see others posted the same thing while I was typing!

    I think the first thing that I'd do is a home A1c test. The lab test could have been wrong - stranger things have happened. We use home A1c tests exclusively, and have been very happy with them.

    If that confirms the lab test, I do think I'd try using a different meter. I don't think it's likely that's your problem, but it's something to consider.

    If it turns out that his blood sugars really are that high, I agree that he's probably going high at night sometime when you're not catching it. A CGM is really the easy way to catch that sort of thing - any chance of a trial from your doctor's office? Otherwise, a couple of nights of testing every two hours is probably your best bet.

    Sorry about all of this. It must be really frustrating.
     
  11. fossmommy

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    Hi Liz... I'm so sorry... how frustrating that must have been for you. It doesn't sound like that A1C was right to me either. I totally worry about that with our DS too.. a big jump in A1C, but it can't really get much worse than it was last time for us (9.7... first one after dx).

    I would have had to have spoken up and asked them what they would suggest you do to change it. Did you show them your meter? Did they give suggestions?

    Are you working with the Texas Children's programs? We are (in Houston)and they are NOT encouraging us to check more than 4 times a day, so if that's the case with you, maybe you could tell them that they need to change their recommendations to patients if they think you are so far off!!!

    Hugs!!!
     
  12. BozziesMom

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    Obviously, something is wrong and shame on them for treating you like that... it's their job to help you figure out what happened and help you make changes to address it. Not to lay blame and be condescending. Sorry this happened to you. I know how that feels. Terrible.
     
  13. grantsmom

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    I am glad you posted...because you are not alone.

    I left my last endo apt feeling like the most imcompetent, horrible parent.

    Who would have know with those types of numbers!

    I will pray and hope you find the support you need to get to the bottom of this.

    Hang in there MOM!:)
     
  14. kjksmom

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    Not to doubt your son, but are you certain he is checking? My son is that age: he texts me with his number after school before he goes to play basketball. Twice we discovered after two-week periods that he wasn't testing, and was having an uncovered snack to make certain he didn't go low with the exercise. It explained why his pre-dinner number was high, and was confirmed when his A1c jumped at the next visit.

    I blamed myself on some level, for not checking his meter (he had a separate one in his pack). I trusted him (still do) but didn't take into account the peer-pressure thing. Being a teen with D sucks the most for them.

    Anyway, your son is probably very different, but its something to keep in mind going forward. Mine saw the effect of what he was doing when the endo told him the A1c. He wasn't pleased with himself, and that was more important than anything we could have done.
     
  15. Beach bum

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    I agree about the A1c being off, and I would refuse to see a pharmacist. This is a doctors office. You have a right to see a doc, cde or np. They are trained to dispense medicine, not medical advice!
     
  16. caspi

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    I'm so sorry you're going through this! A couple of things come to mind.... As others have said, the A1C may be incorrect because there is no way to have the #'s you are having and then have that A1C. I would ask for another test.

    However, if you feel as though you were treated differently because of the A1C reading, you need to find another endo's office. They should not be treating you badly because of this.

    Good luck and please let us know how you make out! :cwds:
     
  17. skimom

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    How often do you get your meter checked? I would ask for a check everytime they do the quarterly A1C test as that would help to determine whether the numbers you have acted on are valid. Also, why not try another A1C -also,look for other explanations: were there any illnesses in the last 6 weeks that gave you short term high numbers, how is your night time testing regime? etc etc. If something is that anomalous, a second test is easy and would confirm or deny the info.
    In the meanwhile, call the clinic and ask for an appointment so you can discuss how they can better support you as you try and help your child. Everyone should be working as a team and if they think that you are doing things wrong, the least they can do is offer some help and support instead of judgement.
     
  18. KarenRI

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    I recently learned that all A1C's taken from the lab we use in Boston were testing higher than what they really were. I believe changes have been made to correct this. I'm glad to know that my son's A1C's were probably a bit lower than reported. In short, there is reason to suspect your son's A1C may be off.

    Also, he is 13, and probably in the throws of puberty, which can make them run high. My son is also 13 and is going through this.

    Maybe your son is a little higher, but a lab mistake reported an inaccuate number??
     
  19. mom2kenny

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    Do they check by a blood draw, or finger poke? They do kennys by a finger poke. The last time he was 7.8, which was out of sync with what i thought it would be. He has never had an A1C higher than 6.5, so it was a shock. The dr downloads his meter through the computer, so she could see that it didn't make sense. Washed his hands and did another A1C and it was 6.2.
     
  20. TheFormerLantusFiend

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    I agree- either the meter is broke, it's being used wrong, the A1c is wrong, or your son has one of those weird medical things that causes A1cs to be artificially high. I think you should ask for a fructosamine (sp?) test, as it does much the same thing as an A1c, and if something is weird (not bad, just weird) with your son's blood, then the fructosamine will show a lower blood sugar average.
     

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