Thanks, :) Our appointment went well though I was feeling a little intimidated as there were five adults in the room. It went over an hour. Then Ashley had physical checks afterwards and to my relief, his testicles do not appear to be pubertal apparently. Dad stayed in the room with him for the exam so I don't know exact details, but Bruce said the doctor said everything seemed ok. The bad news is that the consultant from Auckland was not supportive of the suspension issue. He felt that 2.50mg incremental raises and drops ok. I told him that I was splitting the pills into quarters though to get to the doses that had been scripted since the doctors script for suspension. That from now on I would only work upwards or downwards in 1.25mg amounts therefore. I was disappointed basically because I felt that it was giving new parents a message that 12 month approval and passing of meds (you have to apply for the suspension to that panel 12 monthly) somehow may make them feel that this CAH is so serious that they do not pass the meds ofr more than 12 months. It angers me that they are probably subsidising other drugs that are far more unstable (his reason for not advocating pharmacy based suspension!). We established that Ashley must be checked three monthly or more frequently (1 monthly) when he is having meds changed or sick. This was good but the frequency of blood tests is to stay the same he says (just 17OHP and renin) as others including ACTH are not accurate anyway and do not particularly tell you anymore than the 17OHP reuslt. He said that renin (to check electrolytes) need only to be done 6 monthly. That bone age is 12 monthly, but 6 monthly if there are visible signs of Precocious Puberty. (This and other philosophies of this "Wait and see attitude" instead of erring on the side of caution and doing things to "orevent" things from occuring where not something I could sit there and accept easily). I feel that it would mean travelling further afield to get a different opinion, but ALL Endo's in New Zealand look to him and another Paed Endo at Auckland at the end of the day and take their advice. So no matter where I go, he will have the last say and this feels like a totally repressive and uncomfortable situation to me. Especially now that my knowledges are being improved and I am able to make judgements. SYNAREL: is available in New Zealand for prescription but needs a Specialist to get it fully subsidized. My pharmacist basically e-mailed me today and told me it was available though. So although it is a pain being a nasal spray, I guess it has made me feel a little more relaxed in the sense that if it came to the crunch and we were opposed to adrenalectomy (which he did not even raise at all---must have known my feelings on that one somehow this time!) there would be "something" as a last ditch attempt to try and slow any Precocious Puberty that occured for Ash. thats providing that THIS particular endo would script it. I note that PHARMAC division is based at the hospital where he is I think?!?!? Perhaps he is the Doctor that the division go to for any Pediatric decisions on med's. I had this thought in the back of my mind when he was talking about the suspension. I wondered if it come to it whether we would have adrenalectomy pushed on us. I have quite openly complained the the Commisioner for Health & Disability in New Zealand about the increased interest in Adrenalectomy and that two parents are having this done possibly without fully informed consent. To be honest, I do not know what would possess a parent to render their child equivalent to Addisonians when cah is one step healthier if well controlled. My Mother cares for a lady who had an adrenalectomy when she was 16 years old. She is now 65. Yes she did have her life extended as a result---but then there was no option---she had a tumor. She takes HCT, florinef, water tablets (diuretics), blood pressure pills, anti depressants for as long as she can remember. The latter is probably because of a lack of dhea's I feel which are also made by adrenals. She can never exert herself, and if she needs to do something, she becomes exhausted. Has dizzy spells and wakes up in hospital on drips. My Mother has to do the heavy work around her home (normal housework), so guess that put me off the adrenalectomy. She has always been that way since the adrenalectomy she says. So yes you can live without your adrenal glands, but what quality of life is it? At least at the moment Ashley can run and play. What happens without the adrenalin to support that? I'l close here by saying that i was relieved to find that he has not advanced as far as I feared he may of. To Laura & carol, My sons Paed Endo has also seen the paper about dosing at the times that we do now. He is very happy if we want to dose Ash that way and said (as you did) that he may need less being dosed like that and he would cut back the 3am dose! That's a turn up for the books isn't it! So now we are the first in NZ on that dosing, and he doesn't know of anyone else that does that as yet. We have blood tests in three weeks time (4 weeks after the change to that) to check if his dose needs to be altered from the way we started. I have been instructed to leave it as is for now. I suppose I made some headway today, but I sure would like to know if any other endo's feel that the renin can wait for 6 monthly??? Or that the ACTH test is a waste of space? I mean I hear this guy say these things and then see so many cut backs and what's to say that these are not just part of a cost cutting excercise? Ashley may be going into hospital nearer to his school holidays to be put on a drip and a stay over to monitor his peaks and lows and see if that dosing regime is ok and meeting his needs. I'll be able to report back better after that what the findings were and let other parents know if the dose regimen is ok. Thanks for the support. Regards Val