The last blood tests have seen a reduction in Ashley’s 17 OHP result.  It was 75nmol/L and his new Doctor wanted to tweak the 7am dose.  However, because I understand what we are doing now, I felt that the 3am one was the one that needed tweaking.  I was right.  When I told him what I was doing, he wrote a letter saying that he felt if we raised the 3am dose it would suppress Growth Hormone.  I emailed him back and said that since on conventional dosing we would suppress that from 10pm onwards, that doing so at 3am atleast would be doing so at a time when the body normallly starts to make cortisol anyway.  That normally when cortisol climbs higher this affects Growth Hormone anyway.   So I remained stoical and said, I was going to leave the doses as I had calculated them, and that if this caused a problem, we would do things the way he suggested in a months time.  

At the appointment last week, we saw him briefly.  The 17 OHP had come back down and all other bloods were fine.  It took some four weeks of just raising the dose by 1.25mg and putting this on the 3am dose and then altering the 3am dose and introdicing a 12.00noon dose to get that 74nmol/L result back down to nearer the normal ranges.  In fact by now I would imagine that Ashley’s levels are back within ranges.  He was impressed.  The growth is normal--more than it has EVER been.  The appointment was SO short, we were out of there in 10 minutes---NO Problems.  I did not need to ask any because I felt that I knew enough about what we were doing anyway.  The ONLY question I had was about the bone densitometry scan that we had.  he had not advise me.  

I’d say he is the best Doctor to have because he is very flexible and has so far seen postive results in the last two appointments with this regime.  I think sometimes you have to go with your guts. 

The other things I had to mention is that sometimes, we shut down and think we cannot do or learn how to do things.  In reality anyone can do a will, and anyone can learn to fix their car.  In fact there are some things that we could probably do very well if we take the time to learn how to do the job properyl.  That is what car maintenance classes are all about. 

Anyone can and should learn more about their childs condtion including blood tests and how to read them, and how to increase their childs med’s and how the Doctor deals with things and exactly what they would increase by when the child grows out of a dose etc.  If you put up barriers to what you can and cannot do, the barrier is in your mind and psychological.  It isn’t a physical barrier--and nothing on this earth can stop what happens within a child when they are not dosed right.  The only obstacles to dealing with it are in your head.