Friday, September 23, 2011

The Good, the Bad and the Ugly

Today we met with our son’s nephrologist (kidney doctor) and we received some good news and some bad news. The good news is that the doctor doesn’t believe the Lithium is causing my son any harm and he’s encouraging us to keep him on it. The bad news is that he believes that both of my son’s kidneys are damaged and as a result, are operating at only 75% of what they should be.

Based on the info he has now, he believes this is possibly a very rare allergic reaction to Trileptal, his other mood stabilizer, or more than likely, he believes it has nothing to do with his medication and instead, his body is showing the long term effect of his kidney reflux that began when he was 6 months old. Initially, we believed that only one of his kidneys were scarred and growing undersized due to his reflux, but after seeing the results today, the doctor confirmed that both kidneys are scared and undersized.

So now we’re waiting on the results of some more tests and based on what the doctor sees, he will determine if we need to get a kidney biopsy. This biopsy will allow him to examine the microscopic filters of his kidneys to determine if his condition is caused by an allergic reaction to Trileptal or his kidney reflux.

So what happens next?

Well if it’s the medication, we can do something about it. But if it’s what he believes it to be, kidney damage from reflux, there’s nothing we can do but watch to see what happens as he grows over the next 5–6 years. The biggest concern is the approaching puberty years. As his body grows, will his kidneys keep up with the growth? If they don’t, his kidney function will continue to drop and then he’s looking at dialyses or a kidney transplant in the future.

So there you have it, the good, the bad and the ugly.

Just another day in my son’s life.

So how’s my son taking all of this? Well he wanted to know if something happened to him when he was a baby to cause all of his problems, he asked, “Did someone drop me or something?” I giggled and said, “no, it’s just how your body was formed in my womb.”

From there he was actually excited to get his blood work done because that meant he could miss out on a little more school. Thankfully, it doesn’t take much to make my little guy happy these days.

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If you can tell from my photo choice above, I’m trying to focus on the positive!


  1. I cross everything I can for your son.
    I hope it's the Trileptal, like that, you can fix it. It would be a real shame if it's the reflux.

    In the mean time, I encourage you to continue your efforts about teaching him a healthy lifestyle.
    It will benefit for everything.

  2. Keeping good thoughts for you and your son. You're doing a wonderful job of handling things.

  3. hope your son will be alright ,but with lithiun you know there is a risk of kidney damage ,as he is very young ,you have to think what is better for him ,ask him how he fells about it,always remember your sons brain still developing,dont be afraid to stop medication if that will make him healthier ,talk to your docs about it ...dont give up.

  4. Anonymous- Thanks for the feedback. Yes, we are always talking to our son, including him in our discussions. I think it’s a good way to teach him how to manage his own care when he’s older. He definitely doesn't want to quit the Lithium, he tells us often how much better his life is with it. I agree that Lithium can cause Kidney damage, but our doctor doesn't believe it's the source of his problem because his kidneys have been getting worse for about a year and he's only been on Lithium for a few months. Hopefully we can get the biopsy to investigate the problem very soon.

  5. That's fantastic. I know how critical moments for you. You handling all this very wonderfully.