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Microalbumin and Ace Inhibitors *UPDATE*

Discussion in 'Parents of Children with Type 1' started by Tuff, Dec 12, 2010.

  1. Tuff

    Tuff Approved members

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    Hi - My son who has had lots of protein in his urine since September just saw the kidney specialist on Friday.

    We were told by the endo that it couldn't be from diabetes because my son has good A1Cs, is only 10 and hasn't gone through puberty. He has had diabetes for 6 yrs.

    Anyway on Friday morning right before we saw the specialist he had a kidney ultrasound which was normal.

    They have ruled out Orthostatic protein (which basically means protein leaks when your are standing up but not when your are lying down). This means that you would never have protein in your first morning urine. Also if you have this condition it is totally benign and won't hurt your kidneys.

    We have done 2 first morning, a 24 hour and several random tests and all have protein and some have lots.

    Well the kidney specialist came into the room with a bunch of info on diabetic nephropathy (diabetic kidney disease). And I said, (Why is that what you think he has?) Then I started crying and they sent my son out of the room. The doctors told me that they will still do a few more tests and depending on the results they will do a biopsy in February but if they see the numbers stay how they are they will presume it is diabetic nephropathy and he will be put on ACE inhibitors in January. The doctors then said, "the kidneys he has will see him to adulthood." Really?? Is that supposed to make me feel better? I was going for a good 80 yrs. They also told me that kidney tranplants are the best to have and that this isn't life threatening. It sure feels like it when it is your child they are talking about.

    This is only supposed to happen to people who have had diabetes for 30 years and with bad control and even then it only affects 30% of diabetics. I just can't believe this is happening.

    Anyway - I am walking around like I did when he was diagnosed with diabetes. So sad. I could cry at a drop of a hat. I know in a few days I will get used to this but for now I am wallowing. My poor boy.

    Just wanted to update all of you who followed my posts in November.
     
  2. pr39

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    I'm not giving advice or anything, just sharing, my daughter was diagnosed
    at age 10 and I think within the year they found microalbumin in her urine and
    put her on medication for it. following urine tests have been up and down.
    I do frequently operate in denial but I just can't believe that less than a year
    with diabetes would start hurting her kidneys, NO she doesn't have the best
    habits all the time reguarding her diabetes but still her aic when they found
    the microalbumin was like 7.3 or something , endos gave her a goal of 7 so
    pretty close to goal. I know lots of other things can cause the microalbumin
    such as excercise (i don't remember the others ,it's been a long time since I've looked them up) . I was devastated at the time she had to start the med. I try not to think about it too much, just keep striving for good habits
    and I hate to say the word control, but whatever you would call it if she
    consistantly had better habits. Anyway I'm sorry you and your child have to go thru this, I hope all turns out well.
     
  3. momof2here

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    so sorry...

    I am so sorry that you and your son have to go through this. I know it seems like another difficult thing to deal with. You are right, you will hear about the treatment and see that everything will be okay. What do they attribute this happening so early on to? It seems so hard to believe, from what we are all always told. My son has trace microalbumin. I don't even know what that means in the scheme of things. I am wondering if that means he is destined for greater issues with protein or what. You and your son will be in my prayers.... I am so sorry again...
     
  4. joan

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    I am so sorry to hear that. It doesn't seem right. They tell us these things can't happen so soon. I hope his testing shows a more benign condition. Did they say there was anything you can do to stop this from progressing? I am assuming they are not starting the ace inhibitors till after the biopsy. I hope the biopsy isn't terrible. I really feel badly that your son has to go through this.
     
  5. kiwikid

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    My 9 yr old has had Diabetes for 8 yrs and she has been on ACE inhibitors for over a year now. We had HbA1c's usually in the low 7's. She had persistent microalbuminuria for the 6 weeks we were collecting early morning samples. We were told by our paediatrician that is was usual "Diabetes stuff" and she wasn't even going to refer us to a specialist or for a kidney scan (which was normal). The tablets haven't caused any problems and the Microalbumin has reduced since they were started. It is our new normal.... :cwds:
     
  6. TheFormerLantusFiend

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    I agree with the endo- I'd be very suspicious of a diagnosis of diabetic kidney disease in a prepubertal 10 year old.
    I notice in your signature that you have a diagnosis of lupus- has testing for lupus been mentioned or done?
     
  7. katerinas

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    An hour ago a friend of mine told me that they found elevated numbers in her daughters test. The number she told me is 60. Is it high? When you mean high what numbers are we talking about? I am very sorry for these news I read your post this morning I hope for the best.
     
  8. TheFormerLantusFiend

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    The normal range given for microalbumin is 0-30, although the average in normal people goes up with age. 30-300 is indicative of microalbuminuria, but you can't be diagnosed unless multiple tests are high- not just on the basis of one test. After a number like 60, they retest in 1-3 months (they wait in case an infection is causing a temporary rise) and if the retest is also above 30, they'd probably send her for more testing. From my experience, that wait is torture!
     
  9. katerinas

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    Thanks this is her second test, she had one last week and one this week 60 the frst time 60 this time. Our doc said to waifor two weeks and redo the test as it may be due to strenous exersise. Does this make any sense?
     
  10. courtneysmom608

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    Courtney has orthostatic proteinuria and has been on an ACE inhibitor for about a year now. She has done Sooooooo many 24 hour split urine collections! Courtneys first #'s were well over 1000 and are now ranging in the 300-400's. She goes back to the kidney specialist the beginning of January. Its a very scary thing having to wait for all of these tests to be done. My heart goes out to you and I hope those urine tests are just a fluke and it does turn out to be orthostatic or something easier.
     
  11. Amy C.

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    Yes, exercise affects the test. So does the blood sugar control in the weeks prior to the test. My son's microalbumin was over 400 when first tested. The ace inhibitor works very well in controlling the levels.
     
  12. Tuff

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    Yes - I insisted they test him now (last Friday) instead of waiting until Feb. I want answers. He did another first morning and it was really high -much high than micro readings so I have no idea what is going on.

    The micro ones were between 70 and 80. But today the first morning was 300. I have no idea what to think. I hope they figure it out real fast.

    Why do they tell all of us that with good control this can't happen at this age and before puberty? It seems there are several on here saying they are in a similar boat.

    I hate this new kind of normal. Whats's next. Always something...
     
    Last edited: Dec 15, 2010
  13. meynen

    meynen New Member

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    microalbuminuria

    Hi, We have the same problem as you with our 15 years old daughter. She is diabetic since age 7 a good HbA1c 6,3 and she has microalbuminuria for several month now. Our doctor wants to treat her with ACE inhibitors but we are not sure that it will help and it has some side effects.
    Does anybody has experience with that?
    Christiane
     
  14. deafmack

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    Yes, the strenous exercise can bring on a false positive in the test for protein and microalbumin being high. You always want to do it first thing in the morning and before the one is running around. Ever since I found this out, when my doctor gives me the lab sheet to go do the test I always go down to the lab get the test jar and take it home and do it in the morning of the next time I am coming in either for my Sister's appointments or to pick up prescritions, etc and then bring it in right after I have finished. I am also on an ace inhibitor and it does help.
     
  15. deafmack

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    I think the most notable side effect with ace inhibitors is the nagging cough, which to me was annoying beyond belief. There are other blood pressure medications that can work that are not ace inhibitors that one can look into as well.
     
  16. Amy C.

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    It is my understanding that Ace Inhibitors allow the kidney to filter the protein properly. My son has taken the medication for nearly 5 years and has no side effects. He currently does not have nearly as much protien in his urine, so I think the Ace Inhibitor is working. I consider protecting the kidneys to be the #1 priority. Keeping the sugars in range is good, but sometimes more is needed. I read somewhere that the lives of many diabetics is extended through the use of Ace Inhibitors as it staves off kidney failure.

    I don't know where you read that it doesn't help.
     
  17. Jeff

    Jeff Founder, CWD

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    If you get a cough with an ACE inhibitor, try an ARB instead. It's another kind of kidney protection drug that functions a bit differently.
     
  18. Tuff

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    They havent's started ACE inhibitors yet. It seems the first morning urine 2 weeks ago was clear. All others since September - 24 hour, lots of first morning, and random, weren't clear - they all had protein. SO based on that one test they are now saying maybe it is transient are say come back in Feb.

    While that's great and everything it seems a little strange after putting us through hell over Christmas telling us all about diabetic nephropathy and transplants.

    I talked to our endo nurse yesterday and she said out of hundreds of patients at the clinic there is maybe only a couple teenagers with microalbuminaria. No one else has it. I told her that's great but MINE DOES. And she says that's right. Hello? What the heck? I would feel much better with more than one clear test before it suddenly becomes nothing.

    Everywhere - American diabetes, Canadian diabetes Association - say if 1 -3 microalbuminaria tests are positive then ACE inhibitors should be started immediately regardless of age as microalbuminaria means damage is occuring to the kidneys.

    We have had many positive tests but just because they can't believe a 10 year old can have it they keep doing more. In the meantime are his kidney's being damaged? I hope not. But if anyone knows if one negative first morning test for microalbuminaria can render it not important I would love to hear from you.:confused:
     
    Last edited: Jan 27, 2011
  19. Lakeman

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    I can never know what you are going through - except that walking around feeling like you might cry at the drop of a hat and when you said walking around like when he was first diagnosed I felt like I knew exactly what you meant. I suppose it is different for everyone but here we may understand just a little better than elsewhere. I am a emotionally tough guy but I have cried more since diagnoses and joining this site more than I have the first 45 years of my life. Reading what I read here is bittersweet.

    I wish there were anything I could do to make this uncertainty and fear any better for you. I hope it all turns out well somehow for you and your son. I hope you can draw strength from somewhere and if you are a God-believing person I would be willing to pray for you - for strength and healing.
     
  20. Amy C.

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    A negative test in the morning suggests Orthostatic proteinuria. There seems to be some disagreement among endocrinologists and nephrologists on how to treat this. My son was so diagnosed, but is still taking the medication to help lower to overall protein. Will he out grow it? No one says for sure. Each specialist my son has seen recommends using the medication.
     

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