What is extremely frustrating I find is that all this issue around the liquid cortef has caused the division here in NZ that deals with "any" suspension hct based, to be dissed from a great height. There is absolutely "no" data whatseover to support the claims that have been made about Pharmacy made suspension. HCT is used to treat many conditions in childhood, not just CAH. I know that they are sometimes only on the meds temporarily, but in not subsidizing the cost to the average New Zealander, then they have the monopoly again where prescribing stuff is concerned and children are getting high doses of something however temporary it is. For our children with CAH or others with Addisonains or any other condition needing this (i.e. organ rejection after a transplant) then they have issues of side-effects from the excess. I know they have to dose these kids slightly over their needs to suppress androgen production, but that is no excuse for battering their bodies with a 5mg dosed tablet or 2.50mg. They are designed for adult use basically. To be honest, this endo was averse to me splitting the pills to 1.25mg! He is only prepared to endorse them being split to 2.50mg. (Though he was told in no uncertain terms that that is the only measurements this child is being altered in from here on out!) He says suspension is something to be weaned off asap, and his attitude to this pharmacy made suspension is completely unfounded. Like I say he spouts off about pharmacy suspension being "unstable" and having "data" from overseas about "suspension" being unstable and that blanket attitude is being applied to "pharmacy made suspension" that has always been used "before" liquid cortef ever hit the scene anywhere. I note that he prescribes it to infants and sees them have "no" problems where control is concerned but still slams it. He says if I want to use it however, that I can but that he will not support our claim for it to be subsidized. In other words we can pay for it or accept the 2.50mg increments up and down. What he does not relaise is that for every 2.50mg up or down that he instructs me to make now, I will be totally ignoring his dosing regime and making it 1.25mg up or down. I am just disappointed that I have to resort to these tactics to avoid my son being over dosed when the doctor is doing nothing to show a demand where these meds are concerned. The suspension costs $17.05 per bottle per week and I could get that on a disability allowance claim, but I guess I was trying to make a point. 2.50mg dose raises are not suitable at certain times in a childs life. I guess the baby here that has the three times a day dosing is getting better dosing now due to my son being a stepping stone or a leg up. He was the one they learned by where c2 times and x3 times was concerned and the large doses (i.e. 5mg) either end of the day. (Sometimes I just wish these guy's "would" think outside the damn square--they would be doing us all a hugh favor!). I did have the impression that he is the doctor and where the buck stops as far as that is concerned---like I say, I feel he may very well be the doctor of choice where the ecpanel go to ask if this med is vital for this particular patient. They will go anywhere where they can get such a biased opinion if it means cutting long term costs and stopping folks being able to dose their kids correctly just to save money!) This I feel is biased and unfair for all other parents who would like to be dosing their children a little less of this stuff. It seems to me like a drastic cost cutting excercise. The testing seems to be getting less internationally where CAH is concerned ---therefore the control is being relaxed not tightened up. I see a period coming up now of children being over dosed or under dosed in the next few years arising because of this relaxed attitude to monitoring and inappropriate cost cutting treatment in the aftermath of the liquid cortef wake. I saw it in my son well before anyone could, because he was foisted onto tablets as an 18 mth old and never rightfully established back on susopension when we got to this "clean green " country :) My ideal is that we would be improving quality of treatment and monitoring for these kids as it is now, not going backwards where quality and control is concerned. At the end of the day, since I have the cortisone tablets and have the knowledges now, I am able to judge what is too big a raise or drop in meds. Been there and done that. Other parents do not and since we have these relaxed issues of control, I am going to make sure I am here and advising parents as they have the same problems we have had cropping up for their kids. I am determined that also, whatever I feel about the laxity around testing and monitoring is recorded and the views of the doctors that I asked or held to question to. The purpose being that, they WERE berated about all this WHEN it arose and that parents were KNOWING this and that they chose to ignore that. So if bad things come about for kids healthwise in future or the government is paying out more in the future because these kids are having to be treated more psychologically or physically (i.e. to repair bone loss they need to do expensive DEXA scanning and prescribe and fund drugs to treat it), then it is an expense they must face at the cost of cutting back on the preventative measures of such arising now. What goes around comes around eventually. I'm just sorry that some kids will lose height with either scenario or have bone loss or psychological issues in the process before the bit that "comes around" comes back to haunt these doctors in several years from now. Part of thinking "Outside of the square" is thinking about each child as a little individual and catering and tailoring to their specific requirements where CAH is concerned. I see kids being treated artificially, and it is artifcial, but there are ways of improving their overall outlook in life and they are being ignored or flouted here. Do not know about anywhere else. :) I note with a sad tone or irony that already two children are going to suffer the cost of lack of control because of this relaxation around control is concerned in New Zealand "before" Christmas. Where is all the data that proves that this op on these kids is "better " for them and that their "quality" of life will improve? Where are these four/five children with the adrenalectomies? Why have they decided to do this porcedure on anymore children until they can produce this "so called" data? It does not exist and if it did, who could believe it, since these kids would have to reach adulthood (I doubt they are yet adults) and be compared physical fitness wise along side a CAH child with their adrenal glands intact! To go plowing into more op's at this time "before" such comes to light, is to do so completely irresponsible.