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Pinch me! No insulin needed except Lantus

Discussion in 'Parents of Children with Type 1' started by forHisglory, Jan 31, 2015.

  1. jenm999

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    Not to stray too far off topic, but I wish someone had told me this early on. This is such great advice, wilf. I had been internalizing "successes" and "failures" in managing my son's BGs - on a cloud when things were going well, in a pit of despair on a bad day. Someone on here has a great signature that says KEEP CALM AND TREAT THE NUMBER. I have really been working on that.

    We're 10 months in. Around month 6 I was crying every day (because, as we all know, there is no time to process this diagnosis at the beginning due to the learning curve). Last week I watched the "Midnight, Three and Six" documentary on the NY Times website. As the mom began spreading all the supplies on the counter I thought, Finally, the world will understand me and what we're going through! But as it went on, I started to recognize myself in that mom and felt this revulsion! No, I can't live like that. I think it's terrible for my son to feel like a victim, and worse, to think he's inflicted this on me. I feel like I have turned a major corner since watching that video and feel so much lighter. Yes, this disease sucks donkey balls but we have to bring a certain dispassionate approach to BG management or we will all lose our minds. :)
     
  2. Christopher

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    Wow, your reply surprised me. I thought I made it clear that I was trying to be helpful to you. I was polite and did not talk down to you. Your mean spirited reply doesn't seem to be in character for someone who is supposedly so religious. But I guess people's true character comes out in times of stress. I understand.

    Regardless of how you feel about my advice, I hope you at least change your attitude towards the disease that your son has. It will not only help you cope better but will also set a much better example for your son, than you are setting now. That is great you feel God gave you this remission, but when God changes his mind and gives your son "full blown" diabetes, your son will need a realistic, rational, and positive approach to his disease. Good Luck.
     
    Last edited: Feb 3, 2015
  3. 3kidlets

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    My daughter had a honeymoon that lasted about 4 months, while it was nice when it lasted and she was able to go to Girl Scout camp for the summer and not have to worry about taking insulin for food, it was also stressful not knowing when it would end. I was dreading it. But when it did end, very abruptly and without warning, I was okay with it.
    However, 5 years in, there are still periods of time when Hana requires very little insulin - even with being a teenager. Mostly when she is getting sick, when her stomach isn't right for some reason, when she's had a week of intense dance practice, or when all the stars align ��. Basically it just happens sometimes. Sometimes for a reason, sometimes for no apparent reason that I can figure out. While she has nice even, in range numbers during that time, it always ends and we are back to the grind. It's just all part of the disease. No predictibility.
     
  4. forHisglory

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    Wow, your reply really surprises me! You qualified it in your initial post when you said, "I hope you don't take this the wrong way." Anyhow, at least I didn't assault your character, your faith (or lack of), or presume to know " the example I am setting for my(your) child." That's going pretty low all because I defended my choice of terminology and strongly dislike the way this disease has changed my family. The feelings I expressed are quite common.

    Blessings to you as well, its a tough journey no matter how you approach it!
     
  5. andiej

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    My son would have fit the criteria. Diagnosed December 2013 aged 10, not in DKA. HBA1C has been consistently between 6.2 and 6.5. His honeymoon seemed to end with his first virus after diagnosis, just 2 weeks from his 1 year diaversary at the start of December 2014. Since the cold his insulin needs have pretty much doubled. We went from 12TDU to currently at 24 units. Based on the weight to units ratio he is no longer honeymooning but there are still times where i feel we are getting plenty of help from his pancreas, we just don't get away with as much as we did before.
     
  6. mmgirls

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    Both my girls have had a tummy/absorption issue for over the last 2 weeks. One DX over 9 years ago and the other not yet a year DX. They never outwardly had a stomach flu but I can tell by the much lower numbers and lack/ delayed spiking that they are not absorbing/digestion properly. Both currently at 30% less insulin and still having some lows from bolus insulin, now going on 2 weeks. In the past with my oldest with a true stomach flu we were down to a reduced basal for over a week then inched backup over the next few weeks.

    My oldest never had a honeymoon when she was DX at 13months and my youngest I we caught super early and my current feeling is that she did not really honeymoon but instead we caught it so early and started her on insulin as soon as the CGM indicated that spike where no longer coming down on their own.

    I wish you luck and hope you have a happy health honeymoon.
     
  7. wilf

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    Glad to see that you've rounded this corner.. :)

    I know from personal experience how hard it is to not take the Diabetes (and every day's numbers) personally, but it is critical to rise above that as quickly as possible. :cwds:
     
  8. DavidN

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    I watched the video last week and thought the same going into it. I also came away bothered. I knew the doomsday tone of the piece put me off, but I didn't quite understand what else bothered me until I read your post .... the anguish this woman was going through in front of her daughter is something I make every effort not to do in front of my son.
     
  9. swellman

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    Firstly, I'm not surprised that an endo nurse has little detailed knowledge of carbohydrate metabolism.

    Secondly, I'm shocked to hear a professed physician "in a related field" actually say "full REMISSION" in respect to type 1 diabetes. That's not how this works ... that's not how ANY of this works. There will be no full remission I am sorry to say and maybe it's time to hit the books again.
     
  10. wilf

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    Good point. I had missed that.

    At this point around 80% of the beta cells in the pancreas have been destroyed. The remaining 20% had been overstressed and overwhelmed, which led to spiking blood sugars, the hospital stay, and the diagnosis. With the introduction of insulin to take up the load the beta cells had time to recover, which they've done. Add to that the effects of the stomach bug, and suddenly (for a little while) things are very easy.

    This is a partial remission. And that is the term they use in the medical literature - they often refer to the honeymoon as the "remission phase".

    But this is not full remission. 80% of the beta cells are gone and are not coming back. The best that can be hoped for is that the remaining 20% keep going as long as possible, and there are things that can be done to try to extend that time. But it is a war of attrition (immune system vs. beta cells), and in the end the beta cells will be done. For some children this happens very quickly, and there is not even a honeymoon. In others if circumstances are favourable the partial remission can be drawn out for considerable periods - months to a year or more. But the partial remission will come to an end - the only question is when.

    There is no full remission.
     
  11. joshualevy

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    Some researchers use the term "remission" to mean using less than 0.5 units of insulin per kilo per day. So someone who weighed 50 kilos (about 110 pounds), but used less than 25 units per day would be said to be "in remission". I have always felt this was very misleading terminology, and using it was a mistake. But some researchers do use the word "remission" in that way. Be careful.

    Joshua Levy
     
  12. sszyszkiewicz

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    After watching all of the back and forth on this, the two things that come to mind for me were

    1) If it were me i would be sooo thankful that my son/daughter was given a reprieve of whatever duration, simply because that was one less day they were "sick"
    2) On the other hand, I think the only thing worse than being baptized into the T1D world, is being baptized into the T1D world twice.

    So to the original poster, there is nobody here that is not happy for this period of time, however long, you have been given. My family was certainly not given the reprieve. it was teach em to swim by throwing them into the water method. You though have a chance to prepare. Intellectually. Physically. Emotionally. Spiritually. That is indeed a blessing. I hope it lasts forever, but you and your husband have been given an amazing chance to get ready.
     
  13. DavidN

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    Well put. Lots of smart grizzled veterans on this site doling out good advice on T1D, parenting and perhaps most importantly, the interplay between the two. Often times it is advice that far exceeds anything you'll learn from a bona fide doctor. Sometimes its best just to listen.
     
  14. Christopher

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    This goes back to my point about using the word remission. Maybe this is all semantics, but to me, words matter. And I think it can be dangerous to label a child as being "sick" because they have Type 1 diabetes. Please understand this, I get the point that you were trying to make and I think it is valid, but our children take our cues from us and how we manage and talk about this disease. I am pretty sure you don't call your child sick in front of them. That's great. But my point remains that the words we do use, and the example we set for our children about this disease is critical in helping them be successful (or not) in living with this the rest of their lives.

    Just my two cents.
     
  15. Nancy in VA

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    My thoughts on this back and forth:

    1) We had no honeymoon. I was calling in 300s+ from the beginning to our Endo and when we had an in-person appointment at about 4 months, I asked the Endo and he looked at the numbers and said, "I don't think you had a honeymoon at all"

    2) I'd be wary of any nurse who doesn't know the liver excretes sugar. They won't understand rebounds or how the body really manages what is going on. I think I'd be shopping for a new practice.

    3) I'd caution you from convincing yourself that your child "doesn't have diabetes" until the numbers go back up. Its fine to not worry so much about the carb counting - boy, I'd love a day off of carb counting. But I agree with others to use this time to read up on diabetes, especially about coming out of honeymoon. You can use this opportunity to research pump and CGMS technology to see if its something you'd like to consider in the future.

    Like someone posted about - this is not a faith thing. It is a biological battle in your battle and the cells that die cannot come back (oh, don't we all hope for incapsulation and islet transplantation soon). I am a person of faith but I believe that just because you have faith that your child "no longer has diabetes" is a dangerous belief and will lead to medical risk in the future if you become blind to what is happening and/or major emotional problems for you and/or your child when the honeymoon will end - because it will end. I choose to use my faith to ask for the support from Him that I need to manage this disease for my daughter every day of her life (and I do manage it, I don't control it, because its not something you can control) to keep her alive and with us for what I hope is a long and healthy life. Because she isn't sick. She has a chronic disease that is manageable.
     
  16. mamattorney

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    Christopher,

    I like you. I do. I think you have a lot of good things to say and I can see the wisdom in your posts. But, can you please stop with the nitpicking. You don't like this word . . . you don't like that word, you don't like this person's mindset, etc. I had stayed out of this thread even though I did "hear" the negative connotation in your first post to the OP. In fact, if you preference something with "please take this in the spirit it is intended", I think you can acknowledge that the words that are coming next are going to be insensitive on their face.

    So you said something insensitive to the OP who is excited that her child is entering what sounds like a very strong honeymoon (stronger than my child ever experienced) and she gets upset. Then half the board tries to fix the situation and explain your position and everything seems much better, the OP is less offended and all is right.

    Then . . . you go and complain about someone else's language.

    You are not the end all be all interpreter of appropriate language to use in reference to this disease. Or is it condition? illness? malady? sickness?
     
  17. Christopher

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    I never said I was. I am just a guy who is voicing his opinion. Kind of like you voicing your opinion about me.
     
    Last edited: Feb 4, 2015
  18. aprilodell

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    I have been trying to figure out why I could not watch that movie. I think you summed it up nicely. I am new to this and having had family members who have done well without all of that drama, made me wonder am I not being more diligent, worried enough etc. It stirred up stuff for me for sure, but I am not sure the message to the non-diabetes community will be the same. I think I initially was taken back about how dramatic the mom was and how bratty the daughter seemed or was that just me. My goal more than anything is to be an honest, thoughtful and positive about this process with my son. I want him to feel he can still achieve all his goals etc, but that he just needs to take care of himself. I work in the mental health field and scare tactics have never worked with any of my clients.
     
  19. Sarah Maddie's Mom

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    "Without all the drama". Yup. I figure there are two types of D parents: the ones who don't make videos about their lives and those who do. Those who do seem to always frame life with Type 1 as a miserable, terrifying, exhausting, debilitating experience. Maybe it's because they think it will help raise money, or maybe folks who want to make films about all the supplies and all the "process" get some sort of validation for their "suffering"? Either way it's not a film I would ever look to to represent my life or my kids life and I certainly don't want our circle to think that that's how we live. because it isn't.
     
  20. Mish

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    to the OP, as long as you can see the honeymoon (or remission, or whatever term we're using) as a normal part of the process of diabetes, then that's great. Because that's what we're talking about. It's just a very normal, well documented, part of the process of diabetes. Small honeymoons, large honeymoons, they're just normal. As diabetes goes on, your child will use more insulin one day and less the next. Neither is good or bad, or happy or sad, cause for celebration or despair.

    It just is diabetes.
     

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