Sam,

What an interesting question.   I have 2 girls both with ssw cah, they are now 8 & 9.  For as long as I can remember, the hours between 3 & 5 pm have been the most difficult.  They were fussy, temper tantrums and had headaches.  My oldest got headaches so bad we took her in for a CT scan.  We called their fussy times "The Gangreen Hours" (everything falls apart).  We changed their dosing about 2 years ago. There dosing is at 8 am, 2pm, 8 pm and 2 am.  We did this mostly because their weight was going up no matter what we did and their height just stood stagnant.  What a change since we’ve done this!  They have grown so much and their weight is great!  Their levels over the last 2 years are the best they’ve ever been.  And they feel better!!!!!!!!!!  They no longer complain about headaches in the afternoon, and they no longer fall apart.  I can’t say it’s wonderful getting up at 2 each morning but they never wake up and the benefits outweigh any of my personal complaints.  It could have to do with age but the the timing of when we changed to 6 hour dosing just seemed to be too coincidental.  And I forgot to mention, just recently my youngest started complaining of headaches, we tried to tweak her doses and it didn’t help.  She had her yearly eye exam and it was discovered that she needs reading glasses.  The times of her headaches coincided with when she needed to do the most reading.  Since the glasses, no more headaches.  There are lots of different things that can cause problems than CAH but I think it is like putting a puzzle together.  You have to get all the pieces and see where they fit.

Best of luck to you!

Blessings,

Tonia