History: he began to drink and urinate excessively in February. Took him to our family doc who discovered that he had protein, a little blood, and ketones in his urine. His blood work also had some abnormalities. we followed up with a 24 hour urine which also had some protein and unusual levels of other things, an abdominal ultrasound which was normal, and more blood work that was still off. We made a trip to Texas Children's ER and they re-ran the urine and blood but this time things were looking much better. Still, they wanted us to have a consult with the renal specialists at TC so we got on the schedule and waited.
Yesterday was our long-awaited renal consult. It was a very long day but the doctor was really nice. I brought in a 1st morning urine of his which always looks very milky. It had settled into a solid white layer about 3/8 inch thick on the bottom of the cup and clear yellow urine above. That got their attention. Apparently you are not supposed to have solids in your urine, especially not enough to make it milky looking or form a thick layer. They got another urine sample while we were there and it tested normal. Oh, and his urine has always had a strong, unpleasant odor, really nasty smelling.
Now, what was that white sediment? Crystals. Lots and lots of crystals. Of unknown type. She ruled out a dietary cause and a kidney malformation as the cause. That leaves a metabolic cause. (Which we already suspected) Her exact words were, "The primary cause is not the kidneys." Next step is to identify the crystals because that leads us to the answer of exactly what is going on. And the protein and other abnormal readings in February? Most likely he had some tiny kidney stones that did enough damage to cause leakage in the kidneys. I remember him crying because his tummy hurt and it hurt to pee. No one suspected stones. Now I am kicking myself.
So next step: identify the crystals
After that: see metabolic specialist to diagnose underlying condition
And then: see neuromuscular pediatric specialist for suspected tethered spinal cord
I feel like we may finally be making some progress.
2 comments:
WHAT!!!!! OH MY WORD!! Poor little man and poor you. I hate that your going through that and so grateful that you seem to be on the right track. Hugs!
Oh boy, that is a lot of information to absorb for one day, but it sounds like you are making definite progress. If you would like to know more about the tethered cord surgery, please let me know. My daughter went through that surgery three years ago. It was a very simple surgery and the best news is that it made a huge difference in her life! We were so glad to finally get a diagnosis and a surgical cure! It was not nearly as scary as I imagined it would be. You are doing a great job!
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