Do you think this year that they could do a sort of minutes of the meeting at the Magic Foundation and record what is said about the testing around CAH and the International Standards.  I will not be able to get there but I really need something to print off as I will have a case before the Health & Disability Commission in 2002 I should imagine and also if that is not successful I will be approaching the Medical Council here.  

I received a letter lately that states that the only tests that our Doctor will fund at PNH are 17 OHP three monthly and renin 6 monthly.  None of the other tests are CAH will be done unless his levels are way out of the normal ranges apparently. 

I have contacted most people in the New Zealand CAH Group and no one really has been back in touch to let me know if this is standard or whether they have other tests as yet.  Maybe other parents do not know what bloods are being run---I don't know.  I did not pay much attention myself until earlier this year when I found the Message Board. 

Is there anyway that we can establish with the help of the magic Foundation a full update on all the care and what the monitoring should be around CAH and the resoning behind it?  It would really come in handy for us.

Thanks

 

Regards