My son has a rare case of vitamin d resistant rickets and has been on calcitriol and calcium carbonate for almost 2 months now. It seems as though these meds have suppressed his appetite and therefor had to be placed on a NG feeding tube. Will his system ever get use to these meds so he will eat normally or will the calcitrol continue to suppress his appetite.
If the calcitriol is the cause of his decreased appetite ... his appetite should return once he stops taking it.
how long does the doctor anticipate he has to be on this formulation? I have a good friend who has a child who is on a feeding tube she has a while to go yet if you have these concerns have a open dialogue with the doctor and of course if it isn't going to be as long as it has been until he stops the medication then you can watch and see if his appetitie returns sorry I am not of more help
No phosphate? That liquid calcium is gross!
Are you sure the calcitriol dose is 4ml, not 0.4ml three times a day? Adult dose for person with osteomalacia has been .6 - .9ml two to four times a day... Depends greatly on individual. The oily liquid is sticky... sometimes hard to get it all in... Capsules absorb better when you get to that point.
I hope you're already seeing a specialist who has treated other cases... Rare means you have to research a lot on your own and be an effective advocate for your child.
Make sure doctor is regularly checking Calcium, vitamin d, phosphate and PTH blood levels & good luck!
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