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Please help me understand a scary endo visit

Discussion in 'Parents of Children with Type 1' started by WillowBean, May 13, 2011.

  1. WillowBean

    WillowBean Approved members

    Apr 2, 2007
    The doctor said that the levels of protein in DS urine was elevated. He said it was less than 30 but he wants it less than 15. He will retest at the next appointment in July. Dr said that about a third of all type 1's will get kidney damage even if they have a perfect a1c. The only good news at the visit is that this a1c dropped by .5. I would love help understanding more about his possible kidney damage.
  2. maryellen816

    maryellen816 Approved members

    Oct 26, 2008
    My daughter had an elevated level once also. I think it is not uncommon. She was retested at the next visit and it wasn't elevated then. And that was about 3 years ago and her level has never been elevated since that once.

    I hope that is the case for you too.

    I don't know about that statistic of 1/3. Seems too high. But in any case I'm sure the rate of children with damage is much lower, meaning that the damage (if any) would be more likely to show up much later in life.

    Try not to worry too much. (Difficult, I know)
  3. PatriciaMidwest

    PatriciaMidwest Approved members

    Mar 2, 2010
    We had one test with protein in it and every retest since then has been fine. I remember being very stressed over it - so I can relate. It will probably be fine next time.

    I believe there are treament options even for kids who test positive multiple times. It doesn't have to automatically mean kidney damage. Hopefully some other parents will post on this - I don't know all the details.
  4. Christopher

    Christopher Approved members

    Nov 20, 2007
    I think your Dr. is mistaken. I think he should have said a third of all people with DIABETES may develop chronic kidney disease. Not Type 1. I routinely deal with people on dialysis and the ones who have diabetes are almost all Type 2.

    I am sorry your endo scared you. You have been doing this as long as I have so you know what I am going to say next. I really think it is more important to focus on understanding how insulin/food/exercise effect your child, and working hard to keep their bg within range, all the while making sure they are a kid first and foremost, rather than worry about what MAY happen. There a ton of things we can worry about with our children. If we spend all our time doing that, before you know it they will be grown and gone and we will have missed all that time....

    If you really need to get more information about kidney disease please follow this link:


    Take care...:cwds:
  5. Tuff

    Tuff Approved members

    May 17, 2010
    We have been dealing with protein in my son's urine since last fall. He has much higher amounts than your child's levels. We were told by a ped nephrologist that it was diabetic nephropathy last Dec. and to wait and see in a month before starting Ramipril. We were devastated to say the least. Then in Jan. we were told nope the protein is a little better so it isn't diabetic nephropathy but to come back in March. Well in March they decided yes he does still have diabetic nephropathy and to start the meds. I said whaaaat?? You told us he didn't and now again he does??? I said I wanted 3 more first morning urine tests to confirm. He said fine. Well the lab lost one of the three tests but of the two they were around 30 each. So they again decided it isn't diabetic nephropathy and we dont need to go back. It was hell getting this diagnosis twice and he still has plenty of protein but to save myself from constant worrying I am going to choose to believe the Docs when they say he doesn't have it and try to make myself ignore that niggling feeling I get when I think about all that protein he spills every day. Good luck - I hope your turns out to be nothing too.
  6. Amy C.

    Amy C. Approved members

    Oct 22, 2005
    If your child spills a small amount of protein in the urine, it means that further testing is needed. Protein can show up for a variety of reasons that are not indicative of kidney damage -- exercise before the test, sugars that are out of range a few days before the test. Most doctors order a couple of 24 hour tests or perhaps a test where the daytime urine is split from the night time urine to see if protein is still present.

    This doesn't mean the kidneys are damaged.

    To prevent kidney damage and the further spilling of urine, most are put on an ace inhibitor -- a daily pill that is usually used for blood pressure with the side effect of stopping the protein from leaking into the urine.

    My son has protein in his urine when he stands up, but not after lying down (as in sleeping at night). This is a common problem with growing children and is detected in diabetics because they test the urine so often. I guess the person outgrows this condition, but it doesn't result in kidney damage.
  7. Beach bum

    Beach bum Approved members

    Nov 17, 2005
    We had this happen a few years ago. Levels were elevated so we needed to retest. Our nurse said it's not uncommon to get a high reading, especially when you are not using the first void of the day. We went to the lab they gave us the stuff to use at home first thing in the am. Test came back fine.
    Hopefully this is the same problem.
  8. WillowBean

    WillowBean Approved members

    Apr 2, 2007
    Thanks for the information, I also appreciate the reminder to stay calm and not to worry about what may happen.
  9. wilf

    wilf Approved members

    Aug 27, 2007
    My understanding it that this statement is incorrect. :(

    Challenge him next time you see him to provide the source for this statement.

    In the past (ie. decades ago) about 1/3 of those who developed Type 1 diabetes went on to develop kidney damage. But diabetes management tools were relatively crude, and A1Cs in the Type 1 population were much higher. At this point, that number is much lower.

    Certainly the best predictor of whether kidney damage will develop are the average blood sugar levels as measured in A1Cs (the higher they are the greater the odds of developing kidney damage), which is why we all work so hard to keep them down.

    There is a whole chapter on complications in Type 1 Diabetes by Ragnar Hanas. I would encourage you to read it, as it helps put things in perspective.
  10. jilmarie

    jilmarie Approved members

    Jan 29, 2007
    That's partially because there are many more people with type 2 diabetes than type 1 diabetes. Patients with type 1 also have a higher relative rate of kidney transplantation because they tend to develop end-stage renal disease at a younger age than type 2 patients.
  11. 3kidlets

    3kidlets Approved members

    Aug 3, 2010
    Protein in urine can happen from time to time in non-D children too. It isn't uncommon. My niece (non-D) had to go back for a second urine test after the first showed protein (not sure of the level). When she went back it was gone.

    Also, growing up, I always had protein in my urine. It was attributed to running and athletics (I think it is fairly common in runners). After I became more sedentary as an adult, I never had it again.

    i know I can't tell you not to worry. But like I said, it doesn't automatically mean kidney damage.
  12. Becky Stevens mom

    Becky Stevens mom Approved members

    Oct 14, 2008
    Yes, absolutely! I really wish the doctor had NOT shared his alledged statistic with you:mad::( Statistics are really just numbers. I dont put much stock in them. Chris is exactly right;) All we can do is our best to keep our kids healthy. Richard, who sometimes posts on here, has had type 1 for over 60 years and is very healthy and active and I dont think he has any kidney problems.

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