We went to a pediatric neuphrologist today that we were referred to by our pediatrician (because she was in the same medical group).
We didn't really get the answers we were looking for.
There were no tests run, no future tests scheduled and a lot of assumptions and guessing.
We are going to seek a second console to get some answers.
Here are the things we need to know:
We would like to be SURE that Connor has ADPKD and not some other form or some other problem. A blood test can confirm this for us.
We'd like to know what we can do for Connor in his diet to potentially prolong his kidney function and slow the development of cysts.
We would like to know what caused the elevated BUN levels in his blood and the phosphate crystals in his urine.
We would like to know approximately how much water Connor should be drinking as an infant and someone with kidney disease to keep them healthy.
We would like to make sure that he is not experiencing rapid cyst growth, so get another ultra sound to make sure there are not more.
The doctor we saw today did not confirm any of this for us, which was very disappointing.
On a positive note, if there had been something urgent in his blood work that would imply imminent kidney failure, I assume she would have been more attentive so that's good.
Also she told us that 3% of the population have a cyst on their kidney from birth and it never causes them problems.
We are hoping for the best but looking for more answers.
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