Anne-MarieWe arn’t told to raise it when a CAH child is sick, but the levels of aldosterone in a person with normal functioning adrenal glands increase in response to heightened ACTH levels very much similar to the way that cortisol does. However, in a salt waster, this cannot take place. So as ACTH rises in response to any stress inflicted upon the child, without Florinef to cover them regularly, they are exposed to electrolyte loss and fluid loss.
However, as Hydrocortisone has some mineralcorticoid properties, when we increase the cortisone dose, we in turn heighten the ability to then retain more sodium than the child otherwise would with the one dose of florinef. That is one of the reasons that they say we do not need to raise the dose of florinef also. This all makes sense to me as in illness we need to retain more fluids and to do that we need to retain more sodium, so in increasing the cortisone dose this deals with any extra demand.
To have a child rely solely on the sodium retaining properties of cortisone alsone for 24 hours (accroding to the URL above) surely you are leaving them wide open for crisis or growth problems--being that florinef is said to enhance the growth also in these children? As much as I don’t like to appear cynical of what your child’s Doctor recommends, the above is common sense in a child with CAH or anyone with adrenal insufficiency.
So no you don’t have to raise the florinef dose when your child is sick, but you certainly would be wise to dose atleast once every 24 hours or 12 hours. This means if your child has high renin taking one tabletand your Doctor suggested dosing every 48 hours instead, you would be better off dosing half that dose every 24 hours than a full tablet every 48 hours. Surely if you ran blood tests on a day when your child had not had florinef for 24 hours---the renin would look low. There is just too much potential for error, wherease giving the florninef more consistently, will give even blood tests results where renin is concerned and electrolyte levels. Just a novel point of view for you to consider there.
Cheers
Anne-Marie