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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!
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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.
Cathy