Hi Belinda,

I have a six year old son with SW CAH on circadian dosing. (And a little tyke like you, already turning a year next week)

From what I have been able to gather many docs don’t feel circadian rythmn dosing is necessary.  Most kids are able to get good control with 3x/day dosing. I think most docs would find it especially unnecessary for infants - as they don’t have a strong set rythmn yet.

We started circadian rythmn about a year ago because my son’s weight was out of control. He has a huge appetite and moving his largest dose to when he was sleeping has helped us control his eating.

He also seems very sensitive to oversuppression and the circadian rythm dosing has allowed us to further lower his dose. His blood levels have typically been very low (17OHP <10)  (with a few brief intervals of undersuppression). He has also usually been on quite low doses (around 8mg/m2/day). His height has always been fine.

Our issue has always been weight. In the 6 months before we switched to circadian, he gained almost 15 pounds. Now his weight gain has slowed dramatically. He has gained 13 pounds in the 1 1/2 years of circadian rythmn dosing. We have also been able to reduce his dose further.

In all honesty, I don’t enjoy getting up in the middle of the night, but I know it is for a short time and it seems to be helping.

If Eddie seems to be doing fine on 3x/day, growing well, you probably will never  need to switch him. When he is older and has a more set sleeping pattern, if you do decide to switch him, the archives here should offer great info for you.

Hope that helps.

-Chris