Sunday, January 31, 2016

Kanaan's Kidney Update!

It's been awhile since I did an update on Kanaan's kidneys. When I last updated I mentioned that we were going to switch to a doctor in Quincy. We did meet with her and we really love her, however, she also wanted us to be in touch with a pediatric nephrologist in St. Louis as well. Mainly because they would have access to more resources if Kanaan's kidneys decline or a complication arises. We met with a doctor in STL and did not have a good first impression. Kanaan's kidneys and labs were stable and he was more concerned with the fact that Kanaan was short, than anything else. Yes Kanaan is short, he's always been short. He's still on his own growth curve, so none of his other doctors are concerned. This new doctor wanted to put Kanaan on Human Growth Hormone injections. It would be a shot everyday until he's puberty age. The doctor said it was very expensive and that the insurance companies will fight paying for it. It won't help his kidneys in any way it will just make him grow taller. Andy and I were not wanting to do this at all. I mean his kidneys are doing really good, and why mess with it? Who cares if he's short, really? Plus the side effects of the medicine are not good. Andy wanted to switch to a new doctor immediately, I wasn't sure if we were so disenchanted with this doctor because we loved the old one so much, or if he just really wasn't a good fit. We decided to wait until we went back in 6 months to give him a second chance. He once again kept bringing up the Human Growth Hormone and we just didn't feel comfortable with him. So we are going to switch to a new doctor. I called STL Children's Hospital to make an appointment with a different doctor and they mentioned that a pediatric nephrologist will be going to Springfield again. So we are going to try to see that doctor for Kanaan's next appointment. I tried to make an appointment, a month ago, but she wasn't set up to take appointments yet. I will try to call this week to get that scheduled. Springfield is so much easier for us to get to for his appointments. The new doctor trained under the doctor we were trying to switch to at SLCH. After Kanaan's labs in January we found out that his phosphorus was high, so he's now on a low phosphorus diet. So he can't have peanut butter, cheese, any dairy, nuts, seeds, soy, etc. Plus phosphorus is added to a lot of foods, to make it creamier or tastier. Your body absorbs 40% of naturally occuring phosphorus, but it will absorb 100% of artificially added phosphorus. So now we have to read labels and avoid anything that has "phosphate" in it such as: phosphoric acid, pyrophosphate, polyphosphate, hexametaphosphate, dicalcium phosphate, monocalcium phosphate, aluminum phosphate, sodium polyphosphate, sodium tripolyphosphate, tricalcium phosphate, trisodium phosphate, sodium phosphate, tetrasodium phosphate. It is in a lot of things! He's also on a medication to help bind the phosphorus 3 times a week. Hopefully his phosphorus will be back to normal at his next labs.

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