It is good that they were able to alter her doses back like that Sue.  They must be doing so after making observations for many months now.  It does takes some time for side-effects such as poor growth to show.  Unfortunately growth seems to be the last to be picked up as they are only monitoring it every three months or so and it takes several three monthly monitorings of height and weight to actually see that the growth is falling off.  This is usually seen after a dose raise that was too high to start with or an over estimated daily dose at diagnosis.    Every child would be different where doses raises are concerned, so I don’t really like it when they feel they can raise a child’s dose in increments of say 10% or 20% of their total daily dose.  This is very rudimentary and not getting close to what really would be happening as a child grows.   

I may be fussing some too, but to be honest, if there IS a way to get much closer to that in the way they raise a dose as growth occurs, then they should really be doing it where these kids are concerned.   In my opinion, raised as they presently raise them using percentages such as 10% and 20%, dose raises are too infrequent and too large to allow for a nice smooth growth curve.    They should be working off the BSA they formulated for each individual child (i.e. 10mg per m2 or whatever they appear to grow at a normal pace with--and they should WORK towards determining what that is for 12 months when diagnosed by monitoring very frequently the growth and height) and the formula that they settle with for the adequate daily dose should then be used every time the child hits a certain target where increasing the BSA is concerned.  Especially when it is good for height and weight gain and nicely blanaced between the two.   

I.e. when a child grows more than 1/12th of their original BSA (which was used to calculate the dose---i.e. say they grow well on 10mg per m2) they need to raise the total daily dose by 1/12th (or even less on smaller than 1.25mg tablets--i.e. 1mg split into 4) and split that in the percentages required for each dose of the day.  I.e. if your going by the Moeller abstract, you’d split it into those percentages.  EACH dose in the day should be adjusted really.  They should never raise one or two doses or maybe one and leave the others.   It’s like saying that the cortisol needs in one or two areas changes but they don’t in the other part of the day.  Treatment is back in the dark ages at the moment really.  That s because unfortunately they cannot raise doses more in a normal progression from what they are.  they take jumps up, and of course they do not see the fruits of that for many periods of monitoring.   It’s the same when they cut back also too.    If they could drop to much less they would be able to raise doses to more "growth friendly" doses for each child. 

If I used that raise 20% formula for Ashley, it means on a daily dose of 16.25mg his dose would have to be raised 3.75mg per day.  Whereas raising in the way I suggested would only mean one 12th of Ashleys dose would be much less.  The raises would be done much more frequently and they would never go past 1/12th more than their BSA before they had a dose raise again of small amount.  With smaller Paediatric doses such as 1mg tablets that would be totally possible.  They would be going by growth to, which is a good thing.  There could be targets such as:

1m2 - Daily dose raises 1.25mg spread over 4 doses

1.08m2 - Daily dose raises 1.25mg spread over 4 doses.

1.16m2 - Daily dose raises 1.25mg spread over 4 doses.

1.24m2 - Daily dose raises 1.25mg over 4 doses.

and so on and so forth.  I thought that that was more in line with what would happen actually.  Especially as some kids grow at different rates at different ages.  i.e. babies grow more quickly and their doses raises may alter more frequently in the first two years.  Then the doses raises kind of getting further apart as they get past that age, and then perhaps step up again after aged 7yrs.

One thing is for sure...  if they do it like that, they are never under of over treating too much anyway and they will always be seeing a more normal growth curve.  Whereas a dose raise of 3.75mg can really slow a childs growth down terribly.  I don’t think that cortisol needs grow in jumps like that.  I think it is something that grows with the child slowly and in smaller amounts.