We are on that particular dosing regime also.  Here is something you can throw at your Endo...

I put my son on that last year after doing some troubleshooting with Laura K in email.  I was not all too sure at the time but I think she did have her girls on the regime, and after reading the full abstracts (which Carol obtained from the reference library) I felt so positive that it was the best way to dose that I changed "without" the Endo’s consnet with the intention of telling him three weeks from that date.  i guess I felt I would get some resistance but when we talked to him in the appointment he in fact had read the study himselgf and was happy for us to trial it.  we were meant to have 24 hour profiling a month or two later but to check if it was ok but this has not come about as we are in dispute with the local Hospital here.

However it is important to realise that the only reason Endo’s do NOT advocate this regime is:

a.) No long term studies to go by

b.) More room for non-compliance---we may miss a dose.

c.) More difficult for a parent to dose at this time---anti social hours etc.

In all this though the advantages outweight the disadvantages.  here are a few:

a.) More ability to suppress ACTH at times when ACTH is most likely to be made meaning less side effects.  When you dose and it is not really needed, side-effects are more likely to occur.

b.) Girls are exposed to less androgens.  When we dose at 10 or 11pm we are just putting steroid there to "cover" the rise at 3am in cortisol.  So as well as side effects, because the bio availability of HCT is only 6-8 hours (maybe 9 at night) by the time cortisol levels start to rise the HCT dose given at 10pm cannot meet the demands.  Which means androgens are made between 3am and the morning meds. 

c.) Of course also we do not need as much steroid to do the same job.  Think of the above scenario whereby we usually dose a large dose of HCT at 10pm to cover a "small" rise at 3am.  Or the fact that the 7-8am dose has to be so large it has to stomp on all that androgen "before’it can even start to do it’s job in addressing the 8am peak--which is the highest peak as we know. 

d.)  GH (Growth Hormone) is made 1-2 hours after we fall into deep sleep.  High doses of cortisol suppress GH though.  So that dose you give at 10pm is toxic in that it is suppressing GH when a child does most of his/her growing.  Add that to the ainability to lay calcium in those bones due the the high doses of cortisol and you have more chances of the child suffering bone loss.

I think there are other advantages, the above are just a few.  There needs to be a late release pill as I am not in any doubt whatsoever that the above theories are incorrect.  It’s all logical and common sense and for a long time now I haven’t been happy with high doses at night.  10mg at one point at the age of 3 years old and my son did not grow for three years or so.  I have seen him shoot up the last few months in sharp contrast---hopefully the right kind of growth. 
We have a new Doctor and see him this Monday and hopefully, he will see the sense in profiling our son for 24 hours.  I just want to check.
We dose at 2am,7am abnd 3.15pm.  I do want to switch to four doses but want to see the Doctor first.  Bloods were drwan last week for the first time in 6 months and if they are good, I will be asking for 24 hour profile immediately.  Will keep you infomred of the results.

 

Please do feel free to email me if you need anything further.

Regards

Anne-Marie