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Extending the Honeymoon/Looking for an Endo

Discussion in 'Parents of Children with Type 1' started by Mellaril, Aug 17, 2012.

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  1. Mellaril

    Mellaril New Member

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    My son was diagnosed as a Type I during a routine physical. For the last 10 months, we've been able to manage his numbers through diet, exercise and supplements. His numbers are creeping up which our Endo says is proof his pancreas is failing. Her philosophy appears to be drive him to failure so she can manage him on insulin. My wife and I find this attitude unacceptable. I've seen several articles on extending the "honeymoon" for as long as possible but I have yet to find an Endo in the DC Metro area with this philosophy.

    Anybody know any Endos who can think outside their box?
     
  2. Christopher

    Christopher Approved members

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    Welcome,

    You say your son's numbers are creeping up. What were they before and what are you seeing now?

    Your Endo is correct, if his bg numbers are going up, then he for sure is going to need insulin to keep them in range. What exactly is your Endo suggesting to do to "drive him to failure"?

    Some people find diabetes easier to manage once the honeymoon is over because you don't have the unpredictability of the pancreas woking when it feels like it.

    I guess I understand wanting to prolong the honeymoon, but the real focus should be on keeping his bg in range, and if his numbers are high that means giving him insulin.

    Giving insulin is not a bad thing. It is a great thing and it keeps people with Type 1 alive. :cwds:
     
    Last edited: Aug 17, 2012
  3. Mellaril

    Mellaril New Member

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    His morning numbers are 100-120. His afternoon numbers numbers are 90-110. His after dinner numbers are usually 120-150. We got sloppy with his diet and exercise while we were on vacation and a few of his evening numbers hit 180 - 220 but came down the next morning and he's responding to the supplements. His last A1C was 6.1. We expect the next one to be higher.

    We're managing him as a Type II and it seems to be working so far. Our Endo wants us to give him 40 grams of carbs/meal and wait.

    Her attitude is "I know how to manage him once he fails but I don't have a clue what to do with him until he does." It's like she chews us out for refusing to accept her opinion and start him on insulin. I could almost see the gleam in her eye when she saw his spikes while reviewing the meter readings.
     
  4. wilf

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    If his numbers are creeping up, then his pancreas is going to start needing you to give small amounts of insulin to help out. You should be proactive about this, as providing small amounts of insulin will take stress off the pancreas and ideally allow the remaining beta cells to last much longer. That is what extending the honeymoon is all about - giving judicious amounts of insulin when needed, to give the overworked beta cells as much of a break as possible.

    This could take the form of a small morning dose of Lantus each day, or it could take the form of small boluses before meals. Your endo should be able to advise you on how best to proceed.

    Please note that there is nothing virtuous about him staying off insulin - it is counterproductive, and will hasten the demise of the remaining beta cells.

    If it were my child I'd get going with the insulin as soon as possible, based on sound medical advice.
     
  5. hawkeyegirl

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    I agree with wilf. The way to prolong the honeymoon is to start giving him some insulin.
     
  6. Christopher

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    How many carbs does he normally eat per meal?

    That is an odd thing for an Endo to say. If she is that clueless, you are probably right to be looking for a new Endo.
     
  7. steph

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    adding insulin can help prolong islet cell function by giving them a break so that they do not have to work as hard. there are trials going on that focus on extending the honeymoon period that you could look into. i don't know how old your son is, but drastically limiting carbs can be both physically and psychologically unhealthy. not providing insulin the body needs could be speeding up the failure process. insulin isnt a bad thing. it lets the body get the fuel it needs.

    shortly after diagnosis when my daughter's honeymoon kicked in and she went off insulin for a short time, i had this tiny glimmer of hope that maybe the doctors were wrong. i felt that somehow the more insulin she needed, the "sicker" she was. but that is not the case. she has type 1. type 1's need insulin. as her body gets bigger, she will need more insulin because she's bigger, not sicker. your son's body is shutting down it's insulin production. to live and grow, he will need injected insulin.
     
  8. wilf

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    Never mind the gleam in anyone's eye..

    What you need to be clear on is that he has Type 1 diabetes (not Type 2), and that insulin is what is used to manage the Type 1 diabetes. There is no way around using insulin if you wish to keep your son alive.

    That having been said, your family is one of the few very fortunate ones which have such an easy start and such a strong honeymoon. This is simply good luck, but your actions now will profoundly influence the course of his diabetes for the next few years.

    The longer you avoid starting him on insulin, the shorter the remainder of his honeymoon will be. His beta cells (of which he has maybe 20% remaining) are working overtime to try to keep his blood sugars in range. You can deny them any assistance by not giving insulin - in which case they will expire sooner. Or you can give targeted and judicious amounts of insulin to keep them going as long as possible. With luck he could be on low insulin dosages with a strong honeymoon for a very long time to come.

    It's your choice, and you will live with the consequences.

    Please note that I strongly support the idea of using diet and exercise and even supplements (if you have done your research) to keep him healthy as possible, and to assist his beta cells in keeping blood sugars in range. That looks good on you.

    But avoiding insulin at this point is counterproductive, and it will get progressively more so the longer you delay..
     
  9. Mellaril

    Mellaril New Member

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    We're trying to keep him 20-30 grams carbs per meal and all the meat, eggs, fish, etc., he can handle. The endo told us she doesn't want to start him on insulin until he's pretty consistently over 150 since she doesn't want to drop him out low.
     
  10. Sarah Maddie's Mom

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    This^

    I'll add that there is a social and emotional cost to a child ( and I don't know how old your son is) to have to live with extreme dietary restrictions that are incalculable. Your child is developing a life-long, chronic medical condition that will require him to use insulin for the rest of his life. Setting insulin up as something to be avoided or that represents failure, is, imho, an unwise decision.
     
  11. Christopher

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    How old is your son? That seems like an incredibly restrictive and unhealthy diet, no matter how old he is.
     
  12. steph

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    how old is your son? since he was getting a physical, is he involved in sports? My 2 yo gets abot 30-40 carbs per meal, so that is not very much; especially to provide energy for an active boy. You could allow him to eat a more normal diet, and help his beta cells out with a little insulin. I think it's more a mental battle of getting over the idea that insulin is bad. It will soon become your best friend that keeps your kiddo alive and lets them eat what they want, when they want an not suffer organ, limb or eye damage because of it. i started out limiting carbs to give less insulin because type 2 runs in my family, and i was treating her like a type 2. i had to reteach myself the "rules" about diabetes. the first time a dose go up to 3 units for pancakes, i cringed bc it seemed like so much. but she thoroughly enjoyed those pancakes, and her BG was fine.
     
  13. wilf

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    The endo sounds like a bit of a dud. You might want to see about trying to find someone who will work with you if she won't.

    The beta cells provide insulin for 2 purposes:
    1) to cover the basal amounts of glucose being fed into the bloodstream by the liver on a 24/7 basis;
    2) to cover the carbs coming into the bloodstream from digestion of carby foods and drinks.

    A common strategy which is used in situations like yours is to start giving a modest amount of Lantus in the morning, and so to help cover the body's basal insulin needs. This gives the beta cells a break (so they can focus their resources on covering meal-time carbs), and minimizes the risk of lows.

    Your son's basal (Lantus) insulin needs can be estimated based on his weight and activity level, and one would start by giving him a fraction of those basal insulin needs and monitoring carefully.

    I would suggest you invite your endo to work on developing a strategy like this with you.. :cwds:
     
  14. sooz

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    Just curious as to what criteria they used to make the type 1 diagnosis? I agree with the others. Insulin is not your enemy.
     
  15. TheLegoRef

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    My son has eaten an apple that was that many carbs... If he had that much meat, eggs, etc, he'd have high cholesterol to go along with it. I agree with Christopher, the way it is phrased, it sounds unhealthy. Is he getting a balanced (ex. protein, veggie, fruit, and grain) with each meal?
     
  16. sooz

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    I don't know the answer, so this is truly a question:
    If the liver is working overtime to produce glucose and his diet is high in cholesterol is he damaging hs liver? I have always read, for example, when the liver is depleted from covering a rebound low it is good to carb up to replenish the lver.
     
  17. Christopher

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    I am not sure what you mean by "rebound low".

    I know it has been suggested on this site that when someone has a really bad low that is is good to "run them higher" for a few days to "restock" the liver. But I have not seen any scientific or biological data to actually support that theory. I would like to see it, if anyone has it.
     
  18. wilf

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    The liver isn't working overtime to produce glucose, that is just something it routinely does.. :cwds:

    High cholesterol diets (esp. when coupled with inactivity) can lead to liver damage, but there is no reason to think that that is happening here.
     
  19. sooz

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    I am referring to rebound low as it is commonly used here, when a low occurs and the liver spurts out some glucose to cover it. Did I say it wrong?
     
  20. wilf

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    Try reading about "Rebound Phenomena" in Type 1 Diabetes by Ragnar Hanas. It's on pages 49 and 50 in the chapter on Hypoglycemia of the edition I have. Please note that this is a significant sidetrack of this thread, and if you want to discuss further I'd suggest starting a new thread.. :cwds:
     
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