Renal Results and Seizures Update

Yesterday we went to Seattle Children's for Lily's renal ultrasound and then to Swedish Hospital for her nephrology appointment. The ultrasound showed that her kidney growth is normal, and that the tiny echogenic spots are mostly likely tiny vessels and not calcification. They could be early angiomyolipoma, but the afinitor should (we hope) keep those from growing if they are. They are less sure about the medullary echogenicites; they could be crystals (kidney stones), but they haven't progressed since the last ultrasound, so we will keep her on the citrate but it has been lowered to twice a day rather than 3 times, which is really great since it's the hardest med to get down! We will have an appointment at Seattle Children's with Dr. Grady (her awesome urologist) to see if the reflux is causing her UTIs or if she is just susceptible to UTIs and whether the ureteral reimplantation surgery was a success. From my understanding, the surgery prevented the infection from advancing to her kidneys so easily, but did not guarantee no UTIs...just less severe ones. Nonetheless, we'll see Grady in about 2 weeks and get his opinion. Also, Lily's seizures have been increased still. It seems as though bumping the melatonin a bit helped, but then when we had to return to her normal 6mgs that the sleep issue and seizure issue returned. Her neuro has recommended bumping her to 9mgs for the time being. Hopefully if she can get a good night's sleep and the seizures will back down; however, it's hard to tell whether the lack of sleep is causing the seizures or the seizures are causing lack of sleep. Sometimes I want to channel a medical version of Sherlock Holmes and let him come to sudden enlightened scientific conclusions that would solve all of our medical mysteries. Until then, I will keep extensive records and continue our detective work.