Tuesday, September 20, 2011

Watching His Kidneys

We got our son’s blood work back recently and found that the Creatinine test had increased slightly to outside the normal range. According to our lab, creatinine and creatinine clearance tests measure the level of the waste product creatinine in your blood and urine. These tests tell how well your kidneys are working.

Of course I contacted our psychiatrist right away and he reassured me that it wasn’t something to be concerned about since it wasn’t “clinically significant” and that we would run more tests in a few months.

But being the Mama Bear I am, I followed up with our kidney specialist because when my son was a baby he had kidney reflux and as a result, one of his kidneys suffered some scaring and grew slightly smaller than it should have. As a result, his kidneys need careful monitoring to make sure he doesn’t suffer further damage or damage to his body because they aren’t functioning well. 

So as a follow up, I contacted his kidney specialist who responded with:

“These tests are minimally concerning but their trend may indicate some future concerns. I think we need to talk.”

On one hand, it’s good news that his current results are not a significant concern, which was really no surprise to me, but on the other hand, there’s this nagging question about future concerns. He’s so young in his treatment and we have so many years, maybe decades ahead where he needs these medications, I’m dreading the thought of facing kidney problems so soon.

I can’t imagine my son having to stop Lithium. The thought of it makes my stomach sick. It would be like taking away the restored vision of a person who was once blind. Now that my son can finally see the world as it really is, how can he go back to where he was before?

I don’t mean to sound so dramatic, but this is the concern I have in my head and in my heart. Until I know different, I will be praying for my boy.


8 comments:

  1. I finally figured out how to follow your blog! I will be praying for your son too! We tried Lithium for 6 days one time. The first 3 were the best ever in Parker's life, the next 3 were the worst. Not sure if it was due to stress put on him by his school or meds. I know they were never to the correct blood levels, so thinking of trying again?? He is on trileptal (again after a few years), abilify, intuniv, and melatonin... I look forward to following and learning more and more from you!! Praying!!!

    still trying to figure out how to sign:)
    Parker's mom, Deirdre

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  2. I hope and cross everything I can for your son.

    I know that what I say is much easier said than done, but try not to worry about what you don't know yet. You can't know if he'll face kidney problems in the future, neither the degree if he faces kidney problems.
    Put in place a follow up with his nephrologist, maybe ask a more frequent ionogramm, and more important than anything else, healthy lifestyle.
    More frequent ionogram makes easier to detect a problem before it becomes very serious. But ask your son's nephrologist about variations. Don't forget that the lab values are calculated as averages, but a person can be out of average without having any illness. On the other hand, the person can be in the normal range while having a serious problem.
    So, never take a measurement as the alfa and the omega : a measure alone is not meaningful. See within the time.
    And also, if your son doesn't drink enough the day before the analysis, no wonder his creatinine and clearance are out of range ! And in in this precise case, it's physiological : drink more and you fix the problem.
    So, just to tell you that there are a zillion of causes for these two out of ranges values.
    So before worrying, see how things go in the timeframe, during which you'll get much more info : you'll have more analysis to compare, so you'll have a clearer opinion about the problem.

    The other thing you can do is teaching your son a healthy lifestyle : good nutrition and good sleep, exercise, no alcohol, no smoke, no narcotics.
    Even if his kidneys would be damaged from the lithium, it slows the progression of the evil (don't have a better term than evil, but if you do so, tell me :D ).
    And it's one of the best presents you can make to your son.

    About the "what it will become in the future ?", no one knows.


    Regards

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  3. Wow - the comment above is so insightful and intelligent, I think she said the important things. I'm sorry you're worrying, I understand wanting to hang on to some normalcy - I'm holding onto our current state with both fists!!! Be good to yourself,breath, drink water . . .

    And thank you for your kind comment on my post. I'll look forward to reading your blog.
    (((hugs)))
    Lila

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  4. with the lithum make sure he is drinking plenty of water even if he is not thirsty. It helps to keep the kidneys flushed out. hugs kay

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  5. Deirdre- I'm so glad you figured out hoe to follow, I look forward to hearing from you in the future!

    Giulia- Thank you so much for all the info, it was very helpful to get a healthy perspective. I also agree with your advice about teaching a healthy lifestyle to help in the long run. Good stuff!

    Lila-It's great to see you stopping by, I hope you can keep hanging on!

    Anonymous- You're right about the water, especially with the heat we have, I know he needs even more, poor kid, I'm always buggin' him, "Have you been drinking water?", and "Finish your whole glass, you need lots of water!” I'm sure he's getting bored of all the nagging.

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  6. Mama Bear, just to be sure that I'm not misunderstood.
    I didn't say "your son has no kidney problem". It may be, it may be not, I'm not a doctor and I don't know your son enough to tell you firmely that no problem is running.

    But I said "it may be a damage, but it may not be : both are possible with a single measurement". Only the time will tell you that if lithium made serious renal damage.
    I insist on this point because it can easily be misunderstood even if the reader doesn't comment.

    But sure, you can share this analysis to your son : it is a good and concrete support to explain why you are so concern about his drinking water even if he doesn't feel thirsty.
    And since your son understands better the "why drinking even when not feeling thirsty", he will be more willingful to comply :)

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  7. Giulia- I totally understood where you were coming from! I appreciate your advice to keep it in perspective because so often blood tests don't tell the whole story.

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  8. Thank you :)

    But you are not the only reader ;) Many people read this blog without commenting. So when I write something, I think about the reader, who may be not the owner or the OP, who reads and doesn't comment.
    The "invisible reader" if this expression speaks by itself ;)

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