Hi Lada and everyone.
I am a new member and mother to an almost 19 year old young man affected with Dent's disease. My father and an uncle died of it but we did not know it was hereditary until my son was diagnosed at the age of three.
Anyway, I can truly relate to all the other parents. My son has now started college, away from home, and I do wonder if he's taking his meds, eating well, etc., and if his kidney function will become worse more rapidly now that he is on his own. Last summer (2010) , when he was last tested, his kidney function was down to about 35%.
Questions about meds and diet, Lada.
He takes 4 different meds (hydrochl, potassium citrate, ACE, and allo or novopurinol). He took growth hormone for 6 years (age 12 to 18) and it must have worked, because he is now the tallest in our family, at 5 ft, 8 in.
1. I have always tried to make him follow a slightly lower sodium diet than other boys. I read long ago, and told my doctor who agreed, that the HCL did not work if you did not restrict salt in the diet. Is this true?
Does someone with Dent's disease have to be on a lower salt diet? Now that he is in a university dorm I am sure his salt intake is much higher than if he was still at home.
2. My son also has higher than normal uric acid levels. That is why he takes the novopurinol since he is 3. But about 3 years ago his nephrologist took this med away saying it was not necessary, that the doctor in the other city was mistaken to say he needed novopurinol for uric acid. But, probably just by chance, that year he did not take the novopurinol his kidney function went down much faster. So I requested his nephrologist if he could still take it. So he is back on it. Do you think the doctor is right that he really doesn't need to take novopurinol? His urate level is at 420. Does anybody else take novopurinol?
3. And I read some patients take Vitamin D. My son has never been asked to take Vit. D even though we live in Canada where you spend most of the winter indoors. In fact, I remember asking the doctor a while ago and he said not to give any Vit. D supplements because he might not metabolize it because of his condition (?).