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How long before dx did he have diabetes?

Discussion in 'Parents of Children with Type 1' started by njswede, Nov 18, 2015.

  1. njswede

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    OK, this is one of those questions that's impossible to answer, but still...

    I wonder how long before diagnosis Noah had diabetes. He was lucky enough to be diagnosed during a routine checkup and was never really "sick". Or was he?

    Looking back at this year, he's made amazing progress on a lot of fronts. He's gone from needing special education to consistently scoring 100% on every math test and he's gone from being the weakest and slowest in his class to a really good football player. I can't help but wondering in the back of my mind how much of this is just a mental and physical growth spurt and how much is because he has his diabetes under control.

    Is there any data out there how long before dx a patient is affected negatively by the early stages of diabetes?
     
  2. Theo's dad Joe

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    My personal intuition tells me that my son went through 2-3 winters where he had blood sugar irregularities and then came out of it in the summer. In the winter before dx he had polyurea for a few weeks, but he also had had polyurea for short periods in the prior 2 winters.

    As for school his standardized tests went down dramatically in the quarter leading up to dx, and went right back up the next quarter. He also had had very emotional nights after a lot of carbs in the 2-3 months leading up.

    I have read that some people in the early stages of development will have their pancreas "slowed" by the antibodies, but it will over-produce insulin which will produce low blood sugar after the meal and also may result in insulin resistance which can be seen by dark markings usually around the neck. My son did have darkened skin around his neck. He is not insulin resistant though as he gets a normal drop from .5 units, and has a normal TDD right at the end of honeymoon levels.

    keep in mind that he had an 8.7 A1C with trace ketones and went into all in range within 3 weeks and we didn't catch a single 200 PEAK for 6 months on just 4 units a day. IMO He might have even come out of D in the spring if we hadn't caught it in January and might have only started to re-develop to a noticeable degree by maybe July where his doses began increasing.
     
    Last edited: Nov 18, 2015
  3. Lakeman

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    About a year before our daughter was diagnosed we had a physical and the doctor asked if she had any allergies. We said "no" and the doc said that my daughter had what she called "allergic shiners" which are a slightly dark swollen areas around the eyes. My daughter still does not have allergies but no longer has the shiners. Could the shiners have indicated an autoimmune disorder rather than an allergic disorder?

    My son was diagnosed within two months of having his first high BG because we tested him about once a month. His honeymoon is now over one year long. I suspect it may have been extended because the insulin he gets takes the pressure off of his pancreas.


    Anyway, these two anecdotal stories indicate that the time between onset and diagnoses may be about a year.

    In a clinical study some people had antibodies up to 86 months before.
     
  4. DiabetesMama

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    I think that we had signs for a few months before, but didn't know what we were looking at. I remember that after he had gotten strep throat in Jan-Feb time frame, he began drinking ALOT of water. I thought that maybe he was just having a weird reaction to the medicine they put him on, or maybe it was just normal growth spurt stuff because he was also eating everything in the house. We had no idea what this disease was doing on the inside! Between the end of May and July 2 he had lost 30 pounds! After diagnosis, we sat down and started thinking about things, we asked the endo about the strep throat and they said that that was probably the catalyst that brought it on. They explained that he had the antibodies and little bit by little bit, the stresses and sicknesses finally just make it develop. I remember that before he was diagnosed that he dropped things a lot, tripped, stumbled, etc. which is also a symptom. He was having a hard time focusing during school, he was tired a lot, bad color, withdrawn and just not able to do things as well. It is amazing to see the differences in him now, night and day! I am just so glad to have my old son back! So glad we figured out what was going on. I think it is much harder for families who don't have diabetes in their family at all because we had no idea what the symptoms were trying to tell us. He was always smaller than other kids, even as a baby he was slower to gain weight and much slower to get any height on him as well. I just thought he was a slow grower and that he would catch up later. Now I am wondering if that was a clue as well? Don't know, this disease is so crazy in the first place, there's no telling. I remember when he was diagnosed that the nurses were asking ALOT of questions that I didn't think were relevant to what was going on, but now after a year and a half, I understand. They were trying to see if they could find a cause of the disease. For us, there was no family history, only a great aunt that married into the family who had one kid and he never got Type 1 and he's in his 40's now. I wish they would figure it out soon because there are so many kids getting it right now. Here's to hoping.
     
  5. sugarmonkey

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    He had things that I now know are symptoms of diabetes, but didn't know then, for about a year.

    His school work started to go down. I didn't think much of it. He's a bright kid and was working about 2-3 years above his classmates. In that year he went to being about 1 year above, so I thought he'd just reached his level. His schoolwork went back up after diagnosis.

    He got really fidgety in school. He's always been one of those kids who could sit for ages without fidgeting. His teacher said all the boys in her class were fidgety, so I figured it was just a boy thing.

    He got angry a lot more. He's a very even-tempered kid. Never had tantrums or anything. His sister on the other hand was constantly throwing tantrums, so I thought he was just copying her.

    I didn't know these were symptoms of anything. He was 7. I thought it was just an age thing or just a boy thing (I was brought up in a household of 5 girls, so didn't know what boys are like).

    These things happened in the year before diagnosis. And they all went back to his normal behaviour after he got on insulin. He didn't have the constant drinking or peeing. The thing that made me take him to the doctor was weight loss, and I didn't know that was diabetes either.
     
  6. KHS22

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    I don't' think there is any hard and fast info out there. I think Trial Net is trying to trace some of these things and understand it better…

    For what its worth, my daughter was being watched through trail net, and if not, would have definitely been over a year from when she was diagnosed (no symptoms, just A1C increasing) to over, symptoms. AT LEAST a year. So, yah, I don't doubt that diabetes was affecting him long before it was diagnosed…
     
  7. cdninct

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    Lakeman, interesting about the allergy shiners. When he was about 1, the pediatrician commented on what he called my son's "allergy eyes," too. He does have spring allergies, but nothing else that I know of, and the doctor made his comment in the dead of winter. I assumed at the time that the allergies would come to light eventually, but they never did. I wonder now if they signified anything?
     
  8. mom24grlz

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    looking back Ashleigh started displaying symptoms around Christmas of 2009, but we didn't get her diagnosis until 3/23/10. So at least 3 months. I remember her telling me "mom i lost a pound without even trying" then the next week it was "mom i lost 2 lbs, my friends are jealous". I just thought it was because she had started walking to school (1/2 mile both ways) and was now having gym class 5 days a week vs once a week in elementary school.
     
  9. Mimikins

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    I think mine was a fairly short onset (no more than 6 months prior to diagnosis). My school had a blood drive the May before I was diagnosed, and my BG was normal then (I think in the low 90s -I was fairly overweight and was deathly afraid of being a T2 diabetic. How ironic :p). I started experiencing symptoms around July/August. When diagnosed, my A1C was already in diabetic ranges (I think 11.7%), so I know my BG was at least elevated for three months prior to diagnosis.

    I don't know if this is true (I might have seen it on another forum), but I think I read somewhere that by the time symptoms develop half of the beta cells are already destroyed. What I'm unsure of is if the beta cell destruction is more of a linear progression or exponential -for all I know, I could have already experienced some beta cell death when I donated blood but did not reach the threshold for symptoms to start appearing.
     
  10. Mish

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    with my son, maybe a few weeks before he was dx. He was sleepy and sweaty and irritable but we had a lot going on in our lives too, so it's hard to pinpoint, but my best guess is it got really bad in the two weeks before he was dx.
     
  11. kail

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    My daughter was one of those kids that always drank a ton of water. I can't even remember when it started but my best guess is around 12 months or so after she came off nursing/formula etc. It was just her normal. As she turned 3 years she became more moody and clingy but we thought it was her age as her sister started tantrums exactly at age 3. One month before diagnosis she became very hungry. Her urination increased in the 2 weeks before diagnosis but especially the few days before. It was really only a few days to a week or so that I would say she seemed to be drinking more then her usual. funny thing was that after she was diagnosed (age 3year 2 months), her moodiness went away and she stopped drinking alot of water. Not just the excessive drinking but she never went back to the way she used to drink for the prior 2 years or so. So I always wondered also....how long had she been affected.
     
  12. BarbDwyer

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    I can look back and see quite definite signs 6 months prior. My intuition tells me things started to go bad about a year prior to dx. We did not catch it early. He was very sick at dx. DKA and A1C over 11.
     
  13. MomofSweetOne

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    My daughter had hypoglycemia for probably three years prior to dx; I suspect if she'd been wearing a cgm, we would have seen her pancreas was struggling and then overcompensating? She was sick at least once a month in the nine months leading up to dx. I was told she was a "sickly child" when I questioned the doctor why she was always sick.
     
  14. Theo's dad Joe

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    I have read that (reactive) hypoglycemia is linked to later diabetes both T1 and T2. Possibly that the immune response delays insulin getting out to the body and that the pancreas stays in high production mode and it causes more to be released than is necessary to bring down the blood sugar. I think my son had reactive hypoglycemia for a couple of years. Also may produce insulin resistance or signs like darkened patches on the neck.

    I am curious, what kind of autoantibodies did your daughter have?
     
  15. rgcainmd

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    Acanthosis nigricans is caused by insulin resistance/high levels of insulin. That is why women with PCOS often have acanthosis nigricans, because they are insulin resistant. There are other causes of acanthosis nigricans: Addison's disease, hypothyroidism, certain pituitary tumors, taking growth hormones, oral contraceptives (less often), among others.
     
  16. Michelle'sMom

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    This is basically the explanation I've been given by endos. One of them gave me a reading list that included this link:

    http://www.discoverymedicine.com/Na...ty-and-insulin-resistance-in-type-1-diabetes/

    As to the OP, I believe my dd's body struggled for a few years before dx. The endos I've spoken with have agreed. My dd had wetting accidents from kindergarten. The accidents only happened on party days, so I assumed she was caught up in the excitement & just forgot. A typical party day in her school started with hot chocolate & donuts, followed by cookies, then pizza or McDonalds for lunch, followed by more cookies. Basically, it was an entire day of sugar/carb overload, especially for a child raised on limited carbs. The accidents continued through the end of 4th grade. By then she had developed stomach aches & headaches & was losing weight. She was dx'd 2 months later, & there were no more accidents.

    I also distinctly remember the first time I noticed the darkening skin on her neck & underarms. It was during Christmas break. She spent the night with her grandparents & wore pjs her Grandma bought for her. She insisted on wearing them, & grandma gave in. They hadn't been laundered & she came home with a rash. I was applying hydrocortisone cream & spotted the darkening. My understanding is Acanthosis Nigricans is not uncommon prior to full blown T1.
     
  17. Theo's dad Joe

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    Do you know how the insulin resistance makes the skin dark? I have wondered about it because A) I have read (In Think Like a Pancrease) of some cases of darker skinned subgroups that develop diabetes with ketones but in which it may goes away after insulin therapy or became a variant of type 2 and B) The apparent correlation between vitamin D deficiency and T1D.
     
  18. Theo's dad Joe

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    Did the darkened skin go away?
     
  19. Michelle'sMom

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    Yes, within 3 months of dx it was much lighter & slowly disappeared. Unfortunately it returned a couple of months before her dx with PCOS. About 6 months ago her neck returned to normal. Her underarms are still dark, but getting lighter. She's been on Metformin for 3 1/2 years.
     
  20. Michelle'sMom

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