where it concerns dosing our children, is because, as much as they are trained, they simply do not have time to update themselves.  Not all Doctors do straight away.  Some are still learning how to control this as they go along.  Not everyone get’s the choice to change.  We did, but in the event of an emergency, we still have to go to the nearest accident and emergency, and they will contact the person that they feel knows best in that situation.  This will probably be the old Paediatrician that we had.  He will have the last say over what happens to our child therefore in the hospital system to my child.  I complained to every medical body that I could within New Zealand to get this matter dealt with and my complaints looked at.  At the end of the day we simply had to shift his care and are in this situation now as I described above.  All the other Paed’s wuld not act off their own backs when they came to see him on their rounds the last time and would consult with the other Doctor.

In situations like that, as a parent, it does you absolutely no good to be ignorant about your child’s rights to decent care.  I have had to learn a lot of things so that in such a situation, I know excatly what they should be doing.  Although we should not be expected to take the intiative and should be able to relax in the knowledge that they all know exactly what they are doing and feel secure, the reality is, it is never the case really.  I have never felt that in the hospital in the whole ten years we have had Ashley.  In each case, I have had to keep on top of the nurses and even question everything that is done.  Doses have been wrong, or administered wrongly at the wrong times.  Protocol has not been followed as it should be.  It is very stressful everytime that we go in.  the last time we were admitted we waited in side room for two hours before anyone did anything. 

Often we find ourselves wishing we had done this or that, not having fone it and then being stuck within the hospital system and waiting whilst our kids get sicker.  It is the same with every day care and the change of dosing also.  They will not change.  You need to be assertive with them and show that you can make decisions off your own back.  Some Doctors such as the one whom has written the protocol around illness on the url: http://www.cahsupportforum.com/illnessincah.html my site is very supportive of parents being pro active in their child’s treatment and monitoring.  

Luckily he was visiting when we brought up the regime changes with our Paed.  He was very supportive, otherwise to be honest, I think we would have been laughed at or looked like complete idiots.  I always got the impression when I made changes of any nature after educating myself, that because so many Doctors were doing so many different things anyway for children with CAH, that no one really knew what was best anyway.  Well I was given this impression by Ash’s old Doctor.  You simply cannot have this attitude as a Doctor.  Learning and taking in ALL that is being done and being able to understand it and understand it is a must if you are going to specialise in treating these kids.  Having an ego is bad for your education.