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Another one bites the dust!! Insulin pen that is :)

Discussion in 'Parents of Children with Monogenic Diabetes' started by MrsSM, Jun 27, 2011.

  1. MrsSM

    MrsSM Approved members

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    Hi everyone
    Just a quick note to all those following our family. We have just received positive diagnosis for another family member with Transient Neonatal Diabetes. My Husbands father has now been correctly diagnosed after 44 years of living as a type 1 diabetic. He will soon be transitioning off Insulin and onto Glyburide. So now we know that he was able to survive 21 years without any medication to treat his diabetes. I continue to be amazed!!
     
  2. emm142

    emm142 Approved members

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    Wow!! I follow your story because I can't imagine, even after 4 years, being told that I didn't have to take insulin anymore.. and that's effectively what's happening to your family. How is your husband's transition onto Glyburide going? I know he was having some problems with side effects.
     
  3. MrsSM

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    Update

    Hi Everyone who is following our story.
    Here is the update on everyone:

    Scott (my husband) is doing very well off insulin. His sugars are in the range of 5-8 with the occasional 10 or 11 in there. He is not experiencing as many digestive issues as he was in the beginning. He says he's happy that he has a little because it made him eat even healthier than he did before...he's a very fit guy so I better watch out or he'll start looking better than me LOL:p

    McKaela (our daughter - 6 months old)
    She is also doing wonderful. She is actually beginning the remission stage that is common with her specific mutation, her dad had 4 years when he was a child where he required no insulin. She has not had any Glyburide for almost 2 weeks now and sugars are in the 8-10 range which is where her endo wants her to be for her young age.

    Tom (Scott's father)
    Tom was just correctly diagnosed about 2 weeks ago. He has not begun his transition yet as he wants to wait until we get back from family vacation. He has been insulin dependant for 44 years. He was diagnosed at age 21 with type 1. His story is very interesting as he was diagnosed by accident during a routine physical. As he would have been born with this diabetes who knows how much longer he could have gone without needing insulin. He had already gone 21 years without it!!!

    Hope everyone is enjoying their summer :)

    steph
     
  4. Mary Cook

    Mary Cook New Member

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    Your Father-in-law's diagnosis, really interesting

    Hi. You mention that your family's diabetic condition is one of those transitional mutations which re-appear later in life? Which mutation is it? Did your father-in-law not get ill as a baby? If he didn't then his case should open up testing for everyone with type 1??!!

    Mary

    Grandmother to Mason, born 2005, dx'd 2006 mutation K170R
     
  5. smcnair

    smcnair Approved members

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    age of diagnosis

    My son was diagnosed last year but they weren't even sure what type of diabetes he had at first, as I supposably had type 1, diagnosed at 18 months of age. Within a couple of weeks they knew he had monogenic, and they then tested me for Type 1. 2 tests came back negative, and the 3rd was positive but inconclusive. .. there was still no guarantee I had monogenic until I was tested for it. There are forms of MODY (a form of monogenic) that can be diagnosed at any age, although my son and I have permanent neonatal diabetes, which is normally diagnosed before 6 months of age.

    I guess it's possible that as a baby, the father in law may have been sick for a short while, but not too serious, and nobody knew what the problem was (it being so long ago). . .I know that even when I was diagnosed in 1977 there was not the technology, or access to it, that there is now with relation to diabetes care.
     
  6. MrsSM

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    Hi Mary

    My Father never really got sick at all. He was accidentally diagnosed with Type 1 during a routine physical in the 60's. The only sign that he may have been "sickly" as a child is that he was always very thin and had trouble gaining weight until he started on insulin at age 21. He was never hospitalized for illness as a baby/child/young adult. We do not know his family history as his parents are both passed and his father came over from Ireland with his brothers and they all spread out across Canada and the US and did not keep in touch. Unfortunately we are unable to do much research past my father in law. Our endocronologist told me a few weeks ago that at a recent diabetes conference there were talks of testing children diagnosed in the first 18 months of life and anyone with a strong family history like ours. Hope that helps you!!

    Steph
     
  7. MrsSM

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    All the info on my families gene mutations is in my signature.
     
  8. MrsSM

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    Father in law update

    Hi Everyone

    Just an update on our family. My father in law has started his transition from Insulin to Glyburide. So far, so good. He's been able to drastically reduce his insulin much faster than we thought possible. He's been on Glynuride for 5 days and is down to only a few units of humalog and a few units of lantus per day. I predict that he'll be off insulin entirely in about another few days to maybe a week. After 45 years on insulin he is definitely in awe of what he is doing. He's having a hard time believing his sugars are so good when he either skips his humalog with a meal or only takes 4-5 units. So that is the update.

    Hope everyone had a great labor day weekend :)
     

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