Yesterday afternoon was quality time at Children's in DC for the ketogenic clinic.
There we saw the nutritionist and the neurologist that runs the keto clinic.
Brayden is keeping everyone perplexed...
Problem 1 - he is not gaining weight. In fact he lost weight; down 29 lbs to 27 lbs.
Answer - trying to increase he calories...yet again.
Problem 2 - his kidneys. The urinalysis is showing high levels of calcium. He does have a kidney stone in his kidney.
Answer - seeing a nephrologist to really have his kidneys looked at. Also adding more fluid to his diet and a prescription for Bicitrate (not really sure what that does yet). And weaning him off one of his seizure medications, Topomax, that could cause kidney problems.
Problem 3 - despite the 4.25 to 1 ratio of the ketogenic diet, Brayden's urine testing is showing that he is not in ketosis (the whole point of the diet).
Answer - a blood test. The urine test may not give accurate results since his kidneys may not be functioning properly or so the dr explained to me. He formula mixture may need to be altered.
3 comments:
Layne is on Bicitra as well but we have to make his home made because the medicine has carbs in it I think. So we make it out of water and baking soda. What that medicine is for is the acid in his blood, very common on the keto diet. Layne has too much calcium in his urine as well. They explained it like this..the keto diet makes him have to much acid in his blood, therefore causing acidosis..so the acid breaks down the bones and the calcium gets into the bloodstream and is filtered out in the kidneys, therefore he urinates it. So he is on a medicine called Aldactazide for that and it helps. Have you ever noticed any white powder in Brayden's diaper? That's how we found out about Layne's problem.
WOW! Sounds like a lot to do and think about! Hope he doesn't keep everyone perplexed for long! Praying all the tests improve soon. Love and Hugs!!!
HI! Looks like you are in VA. I am right outside of Richmond. Our Nephrologist is at CHKD in Norfolk but makes monthly visits to our Urologists office in Richmond. Let me know if you need any contact info. She is amazing!!! energy4ethan@yahoo.com
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