Friday, May 16, 2008


How do you deal with water and the diet? It's strange isn't it? We monitor not only their food intake but their water intake too? Too much is bad. Too little is bad. Uuggh!!! I've been posting less because Noah's life (= my life), has been crazy lately trying to find out what triggered those 3 breakthrough seizures. Meanwhile, as I'm trying to figure out if Polycytra is the culprit or the NanoVM, Noah started crying a lot and begging for water.
We decided to remove the Polycytra as the NanoVM absolutely has no carbs. For those of you that have a child on Topomax & the Diet, you probably know this stuff. Topomax is a carbonic anhydrase inhibitor. It attaches to the bicarbs in Noah's body and causes him to pee them out. Loss of bicarbs results in renal stones & osteoporosis. Not good. So, Polycytra or Bicytra are liquids that bring the body back out of acidosis to a more alkaline state by flooding the body with bicarbs. I'm sure this isn't the way a physician or dietitian would describe it. But this is how I understand it.
Anyway...... Our dietitian figured out that we could give him 3/4 t. Baking Soda, four times a day as a substitute for Polycytra. We went with that last Friday. Fast forward to Sunday and Monday...... Noah is chasing me around all day, weeping and begging for water. "I'm thirsty" became his constant wail. His hydration level was 1005, which is way too hydrated. This is similar to what happened the previous month on the higher dosage of Polycytra and during his illnesses. Whacked out hydration levels and thirst. The Problem was sodium. Too much sodium in the Polycytra and too much sodium in the Baking Soda. The sodium didn't cause the breakthroughs but it did exacerbate his thirst and caused hydration problems. 30 ounces of water for Noah is plenty but on those days, he could have drunk 60 ounces easily.

For Noah - more hydration = lower ketones = breakthroughs.

The search continues!! Right not we're trying to decide whether to wean him from the Topomax. I'll keep you posted! Thanks to Karen, our dietitian & Dr. Brown, our neurologist, for not giving up on Noah and working with us day-in and day-out!!

Stay vigilant. Don't give up! The diet can change your life. If you do have to let go of the diet, at least you will be able to move forward knowing you gave it your best shot!!

I love my Keto Kid.


Anonymous said...

Hi Cathy,
I have been thinking about you often, I know how difficult the decision you have to make is.
I am curious about this post, my keto neurologist doesn't restrict River's fluid intake. I was under the impression that the urinary ketones are diluted, but not the blood ketones. In fact, River's Dr.'s keep telling me to make sure he's well hydrated.
I realize that you have done a bit of fine tuning with Noah's diet before you got control and that different children need different ratios and restrictions.
It must be so hard to deny Noah water! I really feel for you.
Hope this is all resolved soon!

Anonymous said...

Is Noah using Polycitra or Polycitra-K?
River is on Polycitra-K which is low sodium.


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