louise f.,

My daughter took .1mg at first then was raised to .2mg for awhile and is now back down to .1mg (she is 1 & 1/2).  The reasoning I think being the fluctuating levels of newborns added to the fact that they usually give babies more of everything than they need because they want to keep them alive and it is hardest the first year because you probably don’t know your baby or CAH well enough yet to recognize "signs". 

What happened to our daughter after awhile of being on the .2mg, though, is that she became very bloated - taut skin - very shiny - round face - puffy legs and she had very high blood pressure so they brought it back down.  Her sodium levels have only fluctuated a little since then and in our learning process we have become more confident in signs.  Each child is different but my strongest advice would be to use the archives on this site to learn the flow chart first of what is happening with the blockage so you know what is affected along the road to cortisol.  Once you have that, look for the abstracts and posts about what "normal" levels are for : Androstenedione, sodium, renin, potassium, testosterone, and normal vs. CAH normal 17OHP levels (two diferent things!).   Save those and write down dates and levels when your child is tested for these things so you can see the progression and when they stabilize.   It will help you emotionally and give you something of substance to follow.  Sometimes they overmedicate in the beginning so the levels seem below normal but they will probably come back up to where one result might be suprising and scary because it is high but this is the point where they start to know where your childs needs are.  (They go by the book/body mass for medicating in the beginning because they don’t know what your particular child needs which is different for every CAH child!)

That is my take and my experience.  Others might suggest something different.  Most importantly, however, is you must be secure with your endo.  We have an HMO so we didn’t select ours.  We went to NIH, John’s Hopkins, and referred to those at Cornell for alternative takes on levels, treatments, because we are anal as well as we wanted to know from whoever we could get our hands on if what our Dr. was doing was right.  Once we educated ourselves to the point where we felt secure in what our endo was doing (she was/is doing an excellent job!) we relaxed a little.  Of course as the syringes cease (our daughter and others started being able to take the partial pill of cortef at about 9 mo.) and routines become just that, routines.  You won’t stop worrying but it will get easier.  People typed that to me in the beginning and I couldn’t imagine it but it really does.

Take care. Hope that helped a little,

RebeccaM