ValGood going Julia!
I feel that the change can only be for the best really. Since when you really look at the two choices side by side--out of the two dosing regimes (and dosing three times per day) the dosing WITH the circadian rythms works better than conventional dosing really. Even if you DID get androgen breakthrough on just a three times a day dosing with the new dosing regime, I personally feel it would not be anywhere near like the type of breakthrough you get from 3am on the old dosing regime. Not only that, but it is better for kids this way I feel. To be honest, the actual thought of dosing now with the 11pm and a large amount makes me cringe. All that steroid when it's not needed. Over kill and side effects I feel are a good reason for avoiding it.
That 3am dose is just to keep you going through the night and keep things suppressed UNTIL the 8am dose. Because things kick up then, it would be impossible to go past that time really without getting breakthrough. However, as Carol says (and Laura) you really need to give that morning dose again as soon as you get up. The 3am is just a tie me over" until the BIG peak at 8am. It means dosing it earlier as explained to make sure you are on top of things. (To understand it better imagine that we have to stop things happening not fix them after they happened and dosing at say 8-9am ---things would have already started to be heading out of control).
The solution to actually dosing 4 times per day I felt was pred at 7am--in a small dose. But I am willing to bet that even if there is breakthrough---it is not as much as it was before---and 24 hour profiling will tell that one.
There are absolutely no rules to say we cannot combine these meds to obtain the best function out of them. I.e. a short acting (hct) and a slightly longer acting (pred) to achieve the coverage that we really need. As we know a small dose of pred at 7am is going to give some good coverage until a late afternoon dose is given---which can be at 5pm. Well I certainly intend asking our new Endo in Wellington when I see them anyway.
I think that it is great that so many parents are coming to this new regime and understanding that it is better for their children in terms of avoiding side effects and cutting back the amounts in doses.
Can you email me Julia please---just click below--thanks.