Tuesday, October 25, 2011

Kidney Update

This week we met with our son’s psychiatrist and nephrologist to evaluate our son’s kidney damage (caused by a birth defect) and his ability to stay on Lithium and Trileptal. Both doctors feel that it’s imperative that our son maintain mental stability during these crucial years of development. As our psychiatrist said, “It is not just gratifying, but really critical for your son’s emotional and social development that he have some stability.” He then went on to say that he would not watch our son progress into renal failure, instead he will monitor him closely and stop medication if it becomes a serious risk.

The final decision is based on the direction of our pediatric nephrologist who currently is seeking multiple opinions on whether or not to do a biopsy. As he told me yesterday, he feels the risk to his kidneys is very low and his vote is to keep our son on medication. In the meantime, they will increase his Lithium blood draws to every 6 weeks to keep a close eye on his levels and will continue to do regular urine tests to monitor the health of his kidneys.

These decisions are not being made lightly, they carry significant weight and I’m pleased to see our kidney specialist, who happens to be the Subchief of his Department, seeking many opinions with other doctors regarding my son’s case.

As wonderful as it is to see my son thriving right now, the seriousness of my son’s health is taking it’s toll on me. As his mom, I desperately want him to be well and have a lifetime of stability. I can’t help but feel discouraged because not only does he have a mental illness, but he also has kidney problems that may get worse because of the treatment he needs. It feels like a double edge sword. With medication, his kidneys could get worse, without medication his mental illness will get worse. No matter what decision we make, our son’s life is on the line.

12 comments:

  1. It is so good to hear that your son's doctors are working together to make sure he has the most productive life as possible. It is a fine balance to find. I always am wishing your man the best!

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  2. In the Pink-Thanks a lot, I appreciate your support!

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  3. Mama Bear: "What If?" As a mother, we ask "what if's" every day of our children's life. "What if this cold medicine has some serious side effects?" "What if that bug he just ate is poisinous and should I go have his stomach pumped?" (Laugh if you want, that really happened to me with your husband as a toddler) We absolutely need to consider long term effects of decisions we make for them now, but we must also think of their well-being RIGHT NOW. Your precious son has shown such improvements in the past few months with an excitement for life that will influence who he becomes and make him the man he will be some day. If kidneys become compromised sometime in the future, then we will deal with that when (and if) it happens. I always support you and love you in all your decisions.

    MIL

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  4. MIL (Mother in law)-Thank you, thank you! Your words of wisdom mean the world to me, I always feel your love and support. ((Big Hug))

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  5. Wow - your MIL rocks. And I agree with her 100%

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  6. Our jobs are so hard and we have to make the best decisions given the current set of circumstances. For some of us the circumstances continue to evolve and I know you love your son and want the best for him. All we can do is pray for wisdom and then turn it over to someone who already knows the outcome and is surprised by nothing...working for the good of those who love him.....even when neither of the choices are ones we want to chose from! praying for a peace for you .....thanks for sharing your journey!

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  7. LHOJ- You are so right. I will try and remember this and will read your comment again and again.

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  8. Your son is blessed to have parents like you who understands and cares about his condition. As a parent also, I was touched with your story and you have inspired me so much in loving my children.

    Craftmatic

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  9. It sounds like his doctors are taking this seriously and keeping a close eye on the situation. Many hugs to you. I know you must be very worried.

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  10. Mama Bear,
    Don't wonder every day "what if", because whatever you can do, you won't have the answer before you are into the situation.
    Moreover, these "what if" will only make you unhappy, without helping you to find a solution.

    As I said before, focus on what you can do now to help your son. Now, the only thing you can do to help him is teaching a healthy lifestyle, and it's already a lot.
    You are just a human being, not a wonderwoman.

    No one has a crystal ball to predict the future. You wish you could, but like everyone.
    Me too I wish I could predict what will happen within 10 years, but I can't :(
    So I focus what I can do now to help myself and help my family, staying away from people who complain because they have to assume the consequences of their unhealthy choices (they choose to smoke, they have to assume without complaining and without any support from me : same with alcohol, narcotics and obesity. They choose, they assume without complaining because they chose to suffer. Harsh I know, but I really can't stand at all these kind of persons, I already have my full plate with problems that I didn't create and have to assume, I don't want to assume persons who definitely choose to create problems by themselves. Like my stepmom, or my ex best friend who chose to drink and club, and after, complains for the problems she creates by herself.I stay away from those ones).
    Unfortunately, it's the only thing I can do right now to help me and prepare my future.

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  11. what is your son's dose of Lithium. We have started it with our daughter but it is not showing a difference yet.

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    1. The dose is dependent on each person's body, how it metabolizes, weight etc. So any dose my son has would not be appropriate for your daughter. What the doctor needs to do its run a blood test to check the Lithium levels present in the blood and determine if they are within the therapeutic range for the child's age, weight etc. The doctors would know what that range is. My son has had success at the lower levels of the range when he first went on, then outgrew the current does, which made the levels in his blood drop below his therapeutic range. We have since increased the dose and he is in the mid range. I would discuss with the doctor and get a blood test to check the current levels. Keep in mind, a dose too high above the therapeutic range can be very bad, even deadly, so it's important to always work closely with a doctor to determine healthy Lithium use.

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