"2) Anne - Marie , the blood work for done at Dr.New’s office AFTER I gave the morning meds at 6 am. It was done within about 3 hours I would say.  If the meds are working as they should then after allowing a reasonable amount of time for it to be absorbed by the body, the 17-OHP should be within acceptable ranges for a CAH child is it not ? Does that not indicate then that the meds are doing their job."

Hi Sue,

I see the meds were given before the blood tests.  In this case the cortisol levels would have been rising or peaking and the 17 OHP levels would be somewhat lower than the 500-1000 ranges.  Exactly what this would mean though in terms of growth and whether that is normal is not clear but giving the meds before the blood tests would mean you could not really look at the ranges above as a target.

In small babies in my opinion it is sensible to go by the height and weight more than the blood test results  because babies grow so rapidly up to the ages of two years that you can literally see a fall off in height from one three monthly check to another.  It is MORE important that they go by those than argue whether the 17 OHP is too low or too high because as you see above, this can vary so much from one Doctor to the next and when the bloods are done etc that it is pretty important to accept that growth velocity slowing down is a clear indication of overtreatment when it concerns a child on replacement corticosteroid therapy or with CAH.  The sooner you act the better.  They must also though factor in periods of illness and how long before bloods where taken that meds where increased to assess if this looks like it caused the 17 OHP levels to be low.  

I prefer to get the tests before the morning meds because the evening dose is the one that is far more likely to cause the growth problems if it is TOO high or TOO low.  That is where GH should be in abundance and the dose most important where coverage is concerned.  As it is I m averse to the last night dose anyway, but it certainly is important not to overdo that one out of all the doses.  Also what is important in all this is assessing the 17 OHP just before the next dose is given so that you can tell if the last dose did what you expected of it.  That it actually saw the child through in terms of cortisol replacement and was of a level to allow for normal growth and the least where side-effects were concerned.  How could you assess that much taking the levles an hour after the dose was given when it is peaking?  You have no idea if it will last the 6 or 8 hours that it should.     Taking bloods just after a dose gives you no indication of this much even.  Though it could be done as long as the Doctor interpreting those results factors that in and then plumps for the normal 17 OHP ranges as a target.  For example most normal healthy childrens 17 OHP would be lower than the 500-1000 ranges really and probably around the 100s ng/dl mark.  So if your daughters are that an hour after giving meds then she is looking normal.  However a birth to two year old has much higher levels of 17 OHP I would say that a 3 -6 yr old.  This is basically from studying dhea’s levels which are highest in the first two years of life (probably no doubt due to the rapid growth spurt babies have) and then they fall off and level to much lower until the age of three years which correlates with the slowing down of that growth which is then more steady.  Then at aged 6-7 yrs this raises again.  I think that 17 OHP levels probably mimic this, but that is purely because of the fact that 17 OHP has an influence on what dhea’s would be doing anyway!  Pure guestimating here but quite rightly so--where would we all be without asking questions and guessing half the time??? 

I would therefore tend to not get the bloods done after meds and aim for 500-1000 for a newborn to two years old and go NO lower than that and try to control that baby more liberally.  overtreatment in the first two eyars has a negative impact and that is my reasoning around that one.  Then I would control more cautiously around 300-500 from two yrs and up until aged 6-7 when I would loosen the reigns a bit and let them go back between 500-1000 until puberty.  I really have no idea what each individual Doctors ideas are on that but because they are so busy they do not interact as we do as parents so they would not really have the same outlook on that.  Their control would therefore be much more rigidly between a set bunch of reference ranges for ALL ages as far as I can gather.  Sor of one size fits all kind of theory. 

They most certainly need to do more frequent x-rays (perhaps 6 monthly) for babies I feel.  It is very important to recognise that babies do change rapidly in the first two years and therefore need to be checked more frequently and have a more liberal open minded control.  For one, if they are sick because they cannot communicate their needs, parents have a tendency to err more on the side of caution and double up more frequently in the meds department as some parents have said most recently and this leads to more periods of over treatment.  This is also the case because babies have a less robust immune system.  As they get older this happens much less.  So babies need to be monitored more closely and their 17 OHP ranges need to be a little higher in my opinion.  Not below 500ng/dl certainly when they have not had their meds before a blood tests.  They need to be looking more to their growth than the bloods--but still keeping an eye on the bloods for problems.

I think the control should definately be more refined for all ages, but for babies it is more important to keep an extra eye on height and weight and not brush it off as something else that is to blame for the slowing down of such when it does occur. 

Cheers

Anne-Marie