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Just got back from our follow up with the CGMS

Discussion in 'Parents of Children with Type 1' started by momofphoenix, Oct 12, 2007.

  1. momofphoenix

    momofphoenix Approved members

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    So I thought we were doing super great with our trial and today I was shown how badly I am controlling Phoenix's diabetes. :(

    His favorite breakfast is cereal, and I didnt relize how "bad" it is for him he is spiking into the high 200-300 range after eating breakfast and everything I was told by our old CDE and Nutritionalist was "wrong", The Pump nurse is not going to let us get the CGMS till I get Phoenix's #'s more in control, and once I do that she said I wont want one anyways she also said that we arnt "ready" for the pump.... and then the last blow was that I am over correcting on pritty much everything. If he is 60 at bedtime and I give him 20g free that is to much he only needs 8-10g free..... Her target range for him is 70-150 mine for him is 100-180 I am terrified of lows for him and also hate the highs... She said we are looking at another A1C in the 10's on the First of November... I am feeling like such a horrible Mom right now...

    She also said our meter "Precision Extra" is a bad meter to use for BS and to go back to our One Touch Ultra (which I LOVED anyways) but we pay out of pocket for all the supplies so she gave me 50 strips for the One Touch Ultra and said to use it for a week and see if I see different #'s then I was with the Pricision... So that is where we are.

    I just needed to vent, I know it isnt "all" my fault with the high A1C's but at the same time I feel like a horrible mom when it comes back higher then 8 :(
     
  2. sam1nat2

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    I'm so sorry you were made to feel so bad!!! A bad mother of a D kid is a mom who doesn't check her kids bg, not someone like you!!!

    As for overcorrecting, everyone is so different, as are the snacks!! I'm with you, i over correct vs under. As for target readings, we've been told by many different people, anything under 80 is low. OUr center likes kids to run just a tad high since kids typically don't feel the lows. Night time targets we are 150-200, during the day, 80-150.

    As for being ready for the pump, as long as you can count carbs, you are ready, that and you are willing to learn it.

    As for the CGMS, were you doing a blind trial? I don't see how having one would hurt, after all, you are able to see trends and correct accordingly.

    Chin up momma, you are doing what you can with your kids best interest at heart!! Shame on that nurse for making you feel that way!!!
     
  3. WestinsMom

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    I have to say that with CGMS you would have seen all those problems on your own. It is what has helped us get thing under better control and really "know" what is going on. To say you have to wait until you get things under control is stupid (and I never use that word)!

    You are doing a great job and I think many people would be floored to see how their child's blood sugars really are on CGMS.
     
  4. wilf

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    Sounds like a harsh appointment. I think they could have made their points more constructively, and I would suggest that:

    1) If he is spiking up after breakfast, it is not because cereal is "bad" but because the bolus amount is too low or mistimed.

    2) Overcorrecting is something all of us do at first. Over time you will learn through trial and error how much is needed to get him out of the low and into the optimal range.

    3) The low end of the target range should be 70 (except at bedtime when it should be at least 120). Whether the high end is 160 or 180 is not material, you'll be wanting to correct anytime he's that high anyways.

    4) Spikes after breakfast will not lead to high A1Cs, you only see those if BG stays up all day and night (in which case you need more basal insulin)..

    Too bad she was such a battle-axe..
     
  5. hypercarmona

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    "The Pump nurse is not going to let us get the CGMS till I get Phoenix's #'s more in control, and once I do that she said I wont want one anyways"

    I'm sorry, but this just doesn't seem to make sense to me (and it makes me mad at the same time). It seems to me like she's wanting to treat him like an adult, and in many cases the same rules just don't apply. She also sounds a lot like my first endo, lots of doom, gloom and finger pointing and very little actual help.
     
  6. Mom2rh

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    I find it ridiculous that this woman has so much control over you and the treatment for your ds. I would seek a second opinion. She is acting like some power drunk Santa Claus deciding who is naughty and who is nice and who gets the new gadgets and who doesn't? She doesn't think you are ready for the pump? What do you think? I would talk to the doctor and maybe find a practice that will work with you rather than blame you for your son's fluctuations in BG.

    And major alarm bells are ringing that she wants his target BG so low. No way. My 12 yo son has higher target numbers...they shouldn't be that low in a 8 yo. Seriously...this woman is whacked. He's been dx'd for 5 years and "she" wont' let him have a pump? Time to find a new doctor taht will prescribe it.
     
  7. wilf

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    There is no reason why our DDs and DSs shouldn't have a target BG of 70 (for the low end of the range), unless they have a history of problems with repeated severe lows.
     
  8. Mama2H

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    Ok, I am going to be nice and just say.........can you go to a different endo? I disagree with every single thing that nurse says! I must be the worst mommy on the planet because my daughter ALWAYS spikes above 200 after breakfast, doesn't matter what we do. The only way she prevents the spike is when she doesn't eat at all :( I am sorry. I just disagree with so many things she said on so many levels that I fear if I expand on it I may get truly ticked off.
     
  9. Mom2rh

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    Oh and maybe a combo bolus from a PUMP would help with that spike...but she's keeping that handy little gadget away from you.
     
  10. Momof4gr8kids

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    Jess, I don't understand how after meal spikes and having a high A1C would mean no pump, and no CGMS. That you need to get in control first is beyond me.... I think the nurse is wrong, but I guess since it isn't up to me it doesn't really matter what I think.
    (((hugs))) So sorry. I was really hoping you guys would get approval.
    Jamie
     
  11. coni

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    Whoa! Excuse me? What the heck?!? I wouldn't take that kind on nonsense from her. It's just wrong on many levels. Your child's endo and office work for YOU not vice versa. There is no reason you should feel like a bad mommy.
     
  12. momtojess

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    Isnt one of the benefits of having a pump is to try to get better control? and isnt the cgms helpful in seeing what is going on so you can make adjustments accordingly to try to control this uncontrolable disease?

    I would be making phones calls to either a new endo, or calling them back and asked what she is talking about

    Sorry you have such a rough appt. I always get scared when we have to go for our appt because I feel like if she has a high a1c then I am doing it all wrong and they are judging me.
     
  13. MelissaC

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    What???!!!

    I would be very upset! I sure hope that this "nurse" or whatever she is realizes that the CGMS and the pump are designed to help you have better control! Ugh! What a tird - You are a great mommy and do NOT let this hag get you down :)

    I would demand another rep - call the local sales rep for the product and complain and if that does not work go higher on the scale!
     
  14. melaniej

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    ty has had d for 5 years and every time Ive mentioned the pump Ive been told that was he isn't in good enough control and they have never mentioned the cgms i had never heard of it before here :confused:
     
  15. EmmasMom

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    I agree with everyone else, this nurse needs a reality check, and you may need a new endo practice!

    My daughter has great control... you know why? Because I've been adjusting her insulin pump settings for the past two years based on "problem" foods and growth hormone, things that we could never control on injections. AND I've been able to watch exactly what her BG does 24 hours a day on a CGMS for the past year and adjust things as we go.
    We have great control because of the tools we use.

    If you are attentive, willing to test, and willing to carb count you are ready to pump. A high A1C is great reason to try something different, and a horrible reason to stick with what you're already doing. :rolleyes:
    And... actually seeing what's happening with BG all the time is the best way to make adjustments... knowledge is power!!!!! Most people are stunned when they see what's actually happening between finger sticks, it's no reason to feel bad, it's just information you need to make some changes!!

    You are doing a great job, you just need access to better tools and a useful endo/nurse!
     
    frizzyrazzy likes this.
  16. frizzyrazzy

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    YES YES YES YES YES!!!! Why on earth do they want you to continue to do something that you're not having luck doing? Do they think that magically something is going to work when it hasn't up to this point. Uggh. The only way to make things turn out different is if you do something different. Your endo team is pretty much ensuring that things will turn out the same for you because they're not offering you any way to do it differently.
     
  17. Mary Lou

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    I'm so sorry to hear you're having a rough time with this endo. Can you find someone in your area that is going to work WITH YOU, instead of blaming you?

    Obviously having such a high AIC is going to make you feel horrible all on its own without any added criticism. What you need is some help in controling Pheonix, not additional fear tactics.

    Could you ask for specifics in what they want to see and how, exactly, you are suposed to achieve it, and a time frame to achieve it in?
     
  18. Ellen

    Ellen Senior Member

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    WHOA....There's so much to say in response to your post. I'll start with a strong quote:

    "No one can make you feel inferior without your consent." Eleanor Roosevelt, 'This Is My Story,' 1937, US diplomat & reformer (1884 - 1962)

    Please do not relinquish your feelings and knowledge of being a wonderful, caring, loving, attentive mother, based on the judgment of a nurse who is giving you poor advice. The fact that you are trying hard speaks volumes and should be validated. The fact that you asked to use a CGMS to better understand your child's vacillating blood sugars shows your dedication. The CGMS is a tool to HELP one get better control, not a tool to withold until one gets better control. That nurse herself is out of control in her thinking IMHO.

    12 years ago when my son's bgs were all over the place on 2 shots per day, our then 4th ped endo offered the pump because she felt that was how we could titrate the doses to more closely mimic his needs. None of the three prior endos even mentioned a pump. The purpose of the pump and the CGMS is to gain better control, it's not a prize to win for good control.

    The cereal is not bad, nor is your choice to let him have it. It may be that if he wants to eat that cereal, he'll need to receive his insulin for a certain # of minutes prior to eating it, in order not to spike so high afterwards. That's something you'll learn through trial and error (or through the use of a CGMS).

    You are right to treat your son's low blood sugar at bedtime to allow for safe and restful sleep. She doesn't need to admonish you for your choice of safety for your child. Frankly, I think 70 mg/dl is too low for a target for any child at any time; it's too close to dropping low.

    You are a magnificent mother. You may need to look for a different endocrine team to help empower you with your child's care.

    My hope for you today is that you take back your power and your self-esteem. Make a list of all the wonderful things you do and all of your genuine efforts in helping Phoenix. This may help to reaffirm just how much you make a positive difference in your child's life.
     
  19. SamsMom

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    Well, said, Ellen! I completely agree-the pump and cgms are tools to gain better control not to hold out as reward for "good" numbers. Thank you for putting into words what a lot of us are probably thinking.
     
  20. KeltonsMom

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    I agree!!

    We are looking at getting the CGMS because Kelton has so many lows and some highs, if I were to have a nurse tell me what she told you I would have fired the doctor and gone elsewhere. The purpose of the pump and CGMS is to gain better control, we tried the pump and it didn't work well for Kelton because of too many lows or too many highs.

    I have noticed that it is easy for nurses or doctors to be judgmental, but I am sure they would change their tune if they had a D child to take care of 24/7 and since many don't they are seriously clueless.

    I am thankful that Kelton's new Endo (we got a new one yesterday who is in town) has told us that since puberty is at play that it is next to impossible to get his A1c below 8 where it is at now. He raised two D children and knows what it is like.

    I often have doubts if I am doing all I can for Kelton and told the new Endo this, and he in return told me I am doing a great job..

    There is no doubt in my mind that you too are doing a great job taking care of your child..

    I read this thread yesterday and got so mad at what the nurse told you I had to wait before I responded..
     

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