Chris DWe started the c.r. dosing last May. My son is 5 yrs old (6 in June). His height growth was always pretty good but we have struggled with his weight. Like you Rick, we tried diet and activity level improvements without any results.
He really started gaining weight at age 4. My theory is that he is very sensitive to dose increases and to high carb/sugar foods. At 4 he began to spend more time out of my control - birthday parties, preschool, holiday activities etc. There is a lot of junk food out there in the world and every bite he eats seems to turn to fat on him.
The breaking point for me was last spring. He gained 10 pounds in 3 months when we increased his dose from 3.75mg at 7:00 am, 2.5 mg at noon, and 2.5mg at 7:00 pm to 3.75mg at 7:00 am, 2.5mg at noon, and 5mg at 7:00pm.
When we started c.r. dosing he was on 12mg/m2/day (11.25mg of Cortef divided into 3 doses a day). He was 113 cm tall and weighed 70 pounds.
Now he is on 8 mg/m2/day (8.75 mg divided as closely as possible to the Moeller formula). He is 119 cm tall and 78 pounds.
Most of his weight gain on c.r. dosing was right after I had our baby and we were eating out, or take out, more than usual. Once we stopped that his weight gain went to almost zero.
We recently decreased his florinef from 1 tablet to 1/2 tablet because of blood pressure concerns.
I can fully understand endos’ concern about the 3 am dose. After doing this for a year I am finding it very difficult. Although I usually go right back to sleep, it is still an interruption and I feel more sleep deprived than I would otherwise. Although I also have a 6 mo. old so it could just be the cumulative affect of a baby and two kids instead of one. Even though it is wearing on me, the results make it worth it so far. I will continue as long as we can keep his weight gain slow.
I too would love to move the noon dose to 3:00pm so it would be after school, but we notice my son really "wilts" about 6 hours after a dose. The wearing off combined with the normal afternoon slump is too much for him. His kinderg. has been great about always giving him his meds. A noon dose also works well because then his final dose is at dinner time (5:30pm). He basically has no Cortef in his system late at night when a body typically does have no cortisol. I did some reading last year on secretion of growth hormone. I don’t remember all the details, but I do remember than higher than normal levels of cortisol in the nightime can reduce secretion of growth hormone and affect how the body metabolizes fat (our issue)
I am in a huge time crunch today, but wanted to respond since we have had success with this dosing schedule. If you would like to talk more feel free to email me.