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Protein?

Discussion in 'Parents of Children with Type 1' started by somanybakers, Jul 17, 2011.

  1. somanybakers

    somanybakers Approved members

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    Good Morning,
    Yesterday I received a form letter from my son's endo indicating that he was to begin a new medication and the dosage and to call a nurse to get the prescription phoned in. After 30 minutes of trying to decipher and Googling the medication to see what it is I discovered it is Altace which is a blood pressure medication sometimes used to prevent kidney damage in diabetics.:eek:

    I did a search of this forum and read a lot about the need to do a 24 hours protein/urine test to see if there is actually a problem and also that althletes and some people, while standing, leak protein and it can be non D related.I am very irritated that the way I would find out ds could have kidney issues is in a letter that I have to investigate myself. I am also concerned that we saw our endo last over 2 months ago! :mad: No way they could have just gotten this information. I should note that our last visit was also our first time seeing this practice.

    I am calling them first thing in the morning for copies of indicating tests and to find out what the delay in contacting us was. Anything else I should ask about that you can think of? :confused:

    I guess I am venting more than anything. Anyone irl will just think we are negligent in D care or just not understand what I am taking about. :cwds:

    Ugh! Nancy

    UPDATE and more questions:
    I was able to speak with a nurse on TUESDAY after they promised to call me back on Monday (I called several times). The nurse offered to move my appt with the Dr. to a sooner date and then read to me about the new drug from the book (she told me nothing i didn't already read on Google). Then when i asked why it took 9 weeks to notify us she said it was policy to send info in a letter but not the actual lab test. Needless to say, I am pi$$ed! I told her we would not be starting any new meds without full explanation of lab results and a conversationwith the Dr. So we will see him in 2 weeks.

    His test result read a 59.0 on microalbumin. The test was 9 weeks ago. How much more damage can occur in 9 weeks that we had no idea there was a problem? His A1C is 7.9. Not great but for puberty not horrible. I am so mad about waiting 9 weeks to tell us!!! I cant find much Googling on how quickly this should be treated. I am going to ask for more testing, obviously, before beginning the new med. I have read that extra excercise, dehydration and other such things can cause microalbumin in urine. Luke, is an athlete and the test was run during the peak of travel soccer season so I think it is possible excercise could be the cause.

    Thanks for listening, Nancy
     
    Last edited: Jul 21, 2011
  2. maryellen816

    maryellen816 Approved members

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    You definitely have good reason to be upset. There is no way I would start my daughter on that medicine without some discussion with her doctor first. You should know the test results and be able to discuss what other options you have.

    My daughter had one elevated protein test result years ago and hasn't had another since. The normal procedure is to retest at the next scheduled visit and then if that is high to do a 24 hour collection. Then if that is high to discuss starting on medicine or possibly referral to a nephrologist.

    Maybe it is just a breakdown in communication and not a normal practice.
     
  3. Judy&Alli

    Judy&Alli Approved members

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    We had this same thing happen. I think you need to ask for a first morning specimen. When my dd did this test it came back negative. There are other reasons that his kidneys can spill protien in the urine. If he was extra active the day before the blood draw, it will give a false positive. I wish you the best, try not to panic. I know that is easier said than done.
     
  4. Amy C.

    Amy C. Approved members

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    The usual practice is to do a 24 hour urine sample, and if that fails, another one after that before prescribing the medication. Splitting the sample into day and night is also helpful to rule out Postural Proteinuria.

    I wouldn't get the medicine until more tests have been run.
     
  5. Janimal

    Janimal Approved members

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    I would be very upset to get that letter also and would have paged him as soon as I got it. There is no way I would be able to wait until Monday and a call on the weekend would help them not do that to someone else the next time.
     
  6. somanybakers

    somanybakers Approved members

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    posted an update.
     
  7. deafmack

    deafmack Approved members

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    I would have felt the same way. If that is their policy then they need to change it. I would definitely ask for a retest before allowing your son to start the medication.
     
  8. Amy C.

    Amy C. Approved members

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    My son's microalbumin was sky high -- about 300. 59 is just above normal. Until more testing is done, it isn't even known if there is a problem. You can't give medication on the basis of one test. a 24 hour test or two should be done.
     

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