she weighs 119 lbs and is 4’9 1/2...sorry I forget in kilo and centimeters...also somewhere up there someone said no one said anything about keeping the 17 OHP levels down under 100. But they did, that is what the doctor said his goal was!!!!! So he was okay for her17 OHP levels to be 14ng/dl but not above 100ng/dl.

**Taty’s body mass appears to be 1.47m2.  I was going by the fact that she is 13 yo though.

You can check it at this site here:

http://www.halls.md/body-surface-area/bsa.htm

The Doctor could have been allowing for the fact that medications have been given before the blood tests as they alter the levels somewhat.  They do this by raising the cortisol levels which in turn would suppress 17 OHP levels quite a lot by the time bloods were taken.  That is IF there was over an hour between meds and blood tests being done as those med’s peak in that time in the blood.  If med’s have NOT been given before bloods the usualy levels for CAH kids should be around 500-1000ng/dl though going by certain medical abstracts at PubMed.  Babies have higher 17 OHP levels and grow more than children after aged three or thereabouts so possibly those figures at the upper end are ok for a baby, and less so for a 6-7 yo.  In teenage years, they shoot up again.  As long as the Doctor factors in whether meds have been given or not and is checking the growth and height to see that normal growth is occuring, then that is ok.  What was her growth like in the last few months?  Those 17 OHP levels may be higher at puberty obviously and be in the upper ranges --and beyond I would have thought.    I’d have to look at that one. I don’t know what the "blow up " bit was all about.  If Taty was off her med’s she would grow fast, but then she would only grow to a certain extent really and then that would slow down and stop too early.  So I wouldn’t have put it quite the way he put it that’s for sure. **

  He said to me that you should see how big she would blow up if she went off the medication. She’d really being going at it then, she would BLOW up!!! Right in front of her!! I feel traumatized by yesterday. I keeping thinking about it, and I don’t know what’s wrong with me that I can’t let this just roll off! It bugs me when I get like this!

** Sounds like the Doctor is not really the right person to deal with a child with CAH to my thinking.  I don’t think that "any" Doctor should not talk about a 13 yo in front of her like that.  Even a small child would take that in and worry.  When we were in hospital the other month and I was trying to get the head of the administration to listen to me, I did speak for the first time in front of Ashley, but had no choice.  It was when she claimed that if he had too high a dose of his med’s that it would affect his immunity.   I was getting quite angry by that point as she would not listen and I had tried to explain that in the emergency situation you needed to give at least 100mg and then keep the levels up regularly.  In the end I just said, "Look, if he doesn’t get enough of the stuff, he’ll end up dead anyway, and if that happens, you and this Doctor can take the rap here.  Because if you don’t increase the med’s, I am leaving the ward with him and driving to the next hospital---and if something happens to him from A to B, then I will also blame that on you for not dealing as is appropriate where his health is concerned and putting us in that position."

Within minutes his meds were increased as I had requested.  However, this is really something that happens a lot.  Great deal of ignorance.  She was claiming that she had been a nurse and I had to tell her that even nurses on the ward didn’t really know as much as I as a parent and that they make mistakes.  It is awful that we have to question everything really that they do, but necessary.  That is why it’s good you have support here on the board.  Pretty soon you’ll know more than the GP and you will be a lot more confident in the way that you deal.   I do miss having the security feeling of the Doctor being in control--but in reality I know that if this happened--I’d never forgive myself if it affected him in some way because I did not speak up, but knew that what they were doing is wrong.  I think that is the way most parents feel also.**         

You have done the best thing though by changing Doctor’s, but between having the next appointment, I’d do some research and then have some questions about what blood tests they do and monitoring.  Also, how many other CAH children they care for.  Etc.