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The endo said this is normal

Discussion in 'Parents of Children with Type 1' started by mapoe4, Oct 28, 2008.

  1. mapoe4

    mapoe4 Approved members

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    She said it is normal for John to have numbers like he has. We have an appointment on Thursday. Even without the NPH today he still went low. He dropped down to 65at 11:35. He was 237 at 9:45 most likely from breakfest which is about 8. at 2:25 he ws 353. And now he is 401. How do I convience these people this is not normal? This is 5 hours after lunch. No snack either. They also have a morning snack. So why would he go low. snack is right before recess which is at 11. I am so frustrated with them.
     
  2. mapoe4

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    This is the email she sent me

    Bobbi,
    I looked at the numbers. They are up a down some, however, this is very typical of young kids with type 1 diabetes, regardless of which insulin we use. I think we should have a face to face visit. I have some mid morning times available this Thursday and Friday. Would you be able to make it? I would like to download both meters too
     
  3. Pammers

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    NPH is VERY unpredictable as to its release. Joey was all over the place until he went on the pump.

    Then of course there's the honeymooning thing, where your child can have spurts of insulin production. That usually ends within a year.

    Since you're about 6 months in, you might want to ask the doctor about switching the regimen to something that will provide more stability like multiple daily injections (Lantus plus Novolog/Humalog) or pumping.

    The doctors say its normal because they see it in so many patients, but its not normal for us parents, who want to keep our kids as close to normal as possible!

    Hang in there. There's quite a learning curve with diabetes and (I used to get so mad when people would say this, but) IT DOES GET BETTER.
     
  4. hawkeyegirl

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    In our experience, numbers in the 300s and 400s are not normal. Yes, there is quite a variation in blood sugars for little ones, and it is not reasonable to expect to keep them between 100-180 all the time, but you have every right to be concerned about extreme highs and lows.

    From your posts, your son appears to be very insulin sensitive, which for me calls for one of two solutions: (1) diluted Humalog/Novalog or (2) a pump.

    I hope you can get some answers on Thursday.
     
  5. momtojess

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    I can understand her saying up/down is normal for little ones, but the thing that doesnt seem normal to me is the pattern of it.

    When Jess was little, she would spike in the 300-400s with meals and then come back down, but not 5 hrs later, and not every time. She would also have lows, but only occasionally.

    The fact that he goes low/high same time every day means to me that something is off in the regime, either the food or the insulin.
     
  6. mapoe4

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    I understand the meal spikes and going low sometimes with extra activity and such and I don't freak out about those and also sometimes staying higher for a little while longer with certian foods. I understand the highs for sick days. What I can't seem to get the endo to understand is that he shouldn't be high for the length of time he is and it doesn't matter if he is only having a smaller amount of carbs or a larger amount of carbs. I have even cut down on the carb intake at night and 7 hours later he is still high. Granted he is sleeping but still there is about half hour before he goes to bed after snack and he is still up and down doing things. This may sound bad but I am actually hoping that his A1c is on the high side a little bit so maybe they will do something else instead of telling me this is normal. because they have stressed to me that since his A1c is good that they won't change anything.
     
  7. madde

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    Why is he on lantus and nph?

    If it were me, I would cut out the lantus, and only dose the NPH in the morning cutting it back a unit.

    What kind've snack is he eating in the morning? Does it contain fat & protein, and how many carbs?

    How many carbs is he eating for lunch?

    I know it is frustrating, but the spike into the 400 range is not normal. We normally only see 400 range when Madison is ill. If we see 400 any other time, that is when I start adjusting her insulin/carbs

    Keep us updated.
     
  8. Darryl

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    The numbers may be "typical", but you are right to be concerned. If you endo is not concerned about BG's in the 400's, you should consider looking for a new endo.

    Some endo's take high BG's for granted, as if there is nothing you can do about it. From where you are right now, you could go on a different insulin regimen (Lantus + fast-acting (humalog, novolog, or apidra)), an insulin pump, or a CGMS. If you combine a pump with a CGMS and use them effectively you should rarely see BG's above 300. If your endo is not discussing these options with you, then again, you should consider looking for a new endo.
     
  9. wilf

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    I'm with Darryl on this point. No way should your son who is still honeymooning be having 400s on a regular basis. The endo has failed to develop an insulin regimen that meets your son's needs.

    I'll keep saying it - for a honeymooning child Regular and NPH can work very well, and are worth a try in this case (esp. since Lantus and Humalog have been such a failure). Others on here will have their favourites, so you'll have to sift the input you get for something that you think might work better for you.
     
  10. BozziesMom

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    I was of the impression that the Lantus and Humalog combo wasn't given a fair shake due to there being some issue about giving the injection at school for lunch. It might have worked if the endo had spent the time tweaking he should have.

    What again was the deal with the lunchtime shot?
     
  11. danismom79

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    If I recall correctly, it was the endo (or CDE) who decided Humalog wasn't the way to go. For whatever reason, the endo team just can't get it together. First they tried to cover basal and bolus with just Lantus, then they threw in Humalog for lunch, took the Humalog back out and put in NPH. And wasn't he on NPH in the very beginning?

    I think if you meet with them you need to get a clear answer on their rationale. How are they making their decisions?
     
  12. Darryl

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    Here's the deal with NPH: It has one advantage, and several major disadvantages.

    The one advantage: NPH is a time-released insulin program that you give in the morning before
    sending your kid to school. As long as your kid stays on a carbohydrate plan that precisely matches
    the NPH insulin program, then in theory no shots are needed during the school day.

    The major disadvantages:

    1) You're in big trouble if he forgets to eat at the prescribed times, in the prescribed amounts.

    2) Meals are on a set schedule with no flexibility.

    3) Troubleshooting problems is exceedingly difficult due to the long action time and somewhat
    undefined "peak" of the NPH.

    The lantus/fast-acting regimen gives flexibility in how much is eaten and when. It is easier to
    understand the separation between the lantus and the fast-acting, so troubleshooting is easier.
    The downside with kids is that they will have to take shots at school for their meals.

    Personally, I think that both methods are archaic and unecessarily disruptive to a child's life.
    A pump is the way to go. It solves all of the above problems, and delivers meal and correction
    boluses with 10 times the accuracy of shots. Eating snacks any time, down to a single carb,
    are possible with simplicity and no disruption to the child's routine. There are many choices
    now including wireless and tubeless pumps (such as the Ping and the Omnipod) that are kid-
    friendly, and can stay on during swimming and sports.
     
  13. danismom79

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    This isn't really helping her problem right now, though. And she has mentioned wanting to get a pump.

    As for points 1 & 2 above, he's in school, with set meal times.

    Her son is honeymooning big time. Endo team has had him on a few regimens, none of which were optimal, and none of which made any sense.
     

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