6/01/2006

A visit to the nephrologist

So… diagnosis confirmed. We saw the nephrologist yesterday (in addition to the information booth guy, two receptionists, three nurses and a resident nephrologist), and he has confirmed my iMD* diagnosis of cystinuria. We’ve been instructed to quickly ramp The Girl up to 60 ounces of water** a day, then work toward 80 ounces a day. Let’s break this down:


  • Breakfast: 8 ounces water plus 8 ounces juice

  • Throughout morning: 12 ounces water

  • Lunch: 8 ounces water or juice

  • Throughout afternoon: 12 ounces water

  • Dinner: 8 ounces water

  • Throughout Evening: 12 ounces water

  • Bedtime: 8 ounces of water

  • Night-time waking ***: 8 ounces of water


GRAND TOTAL: 84 ounces of water

Now, the perceptive reader will immediately see that we’re targetting more than 60 ounces of water to start with. This is because we’re not expecting her to manage the full amount each time. And if it’s a battle, I don’t want to have to start all over again after 60 ounces has been achieved. So, cross your fingers for us on this one!

In addition to the water, there’ll be a “mild” drug for her to take. I don’t know what it is, because it hasn’t been prescribed yet. They’re waiting for final confirmation of the diagnosis with a couple of blood tests before proceding with that.

Oh, and since this is a genetic disease, there is a slightly elevated chance that other kids in the family will also have cystinuria. But since it’s still on the order of 1 in hundreds for the cousins, they don’t need to be checked for it. Of course, if the kid starts complaining of back pain and starts vomitting, I’d guess it would be a good idea to get them checked out post haste. As far as The Boy, yep, he’ll need to be checked out. However, they don’t think a genetic test is needed. They’ll check him out the via urinalysis, once he’s old enough to reasonably collect a urine sample.

*Have I mentioned before that I hold an iMD? It stands for internet MD, and it honors my skill at tracking down diseases for whichever symptoms I or a loved-one may be experiencing. Some would call it internet-mediated hypochondria. They’d be wrong.

**For purposes of this description, we will not be counting consumption of caffeinated or alcoholic beverages, as they tend to have a dehydrating effect. All other beverages


*** if you’re 8 years old, and drinking 80 ounces of water a day, including 8 ounces right before bed... yes, you will wake up during the night.

1 comment:

BA said...

Just reading this makes me have to pee.

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