Hi Jim,

Your probably aware that with SWCAH they cannot make aldosterone in addition to the lack of cortisol.  So they take two medications for that instead of one.  The Hydrocortisone and then they take Florinef also, which replaces the aldosterone.   

Although it may seem like they are both the same thing I think that the sw can be more prone to getting very sick in a crisis because if you cannot get their med’s down they can be lacking sodium and electrolytes to a greater degree than a child with just SV.  Although we are told to actually increase only the hydrocortisone when they are ill, florinef also aldosterone usually increases when we are sick, but since cortef has some mineralocorticoid properties, in giving the shot it helps some towards retaining sodium.  

SW can also be more prone to dehydration when the weather is hot and they are doing sports frequently, so I think we need to ply them with the sodium more.  Growth can be affected more in my opinion also because too much florinef or not enough and this upsets growth again.  There are some kids that have been declared SV but then later given florinef because they were not growing too well and their renin levels were out, and I think it is possible to have the salt wasting to a slight degree that it does actually need treatment in some cases, but it takes a while to show up in the bloods and the growth.  

Does your child’s Doctor actually treat any Salt Waster’s?  I am just wondering why he seems to think that treatment of both is no different.  We used to have a Doctor that felt the same and Ashley’s growth suffered for it to be honest.  They need close monitoring at times because things are always changing.  I am all for three monthly testing in ALL kids with CAH, but there is an article on PubMed that states that Salt wasting CAH needs extra attention to detail.