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!