It concerns me that children are having their doses raised so much as opposed to actually having syrup made up and taking a more conservative approach.  I was always lead to believe that after the initial tune up when my child was diagnosed with CAH that all other dose changes would be subtle.  Kind of a little tweak whenever he escaped.  If children are on different doses such a raise may be too much and affect growth.  Arn't we just supposed to be replacing what their adrenal glands would make?  For example, if they had a dose raise based on 10% of their current dosage and they were currently only on 10mg HCT per day, this raise would only amount to 1mg per day.  (Personally I would think that 5% of their daily dose was enough) To that end I would not feel comfortable with more than 1mg dose rise each time.  A child on less of a dose would warrant even less.  Why then should children have to go to the nearest you can get in a tablet dose (i.e. 1.25mg or 1/4 of a pill) when it may compromise growth for a while? 

Does anyone know what the true average dose increases are for children?  Surely it works on a percentage basis.  It's just that what may be fine for some children, may cause others to become over suppressed.  We talk about cures for CAH, but I think that I would just be happy to settle for the manyfacturers making pills that are more suitable for children to take, i.e. 0.5mg and 1mg pills.  Would that be so hard?  There must be so many other conditions that need treating with hydrocortisone in children that warrant those doses, instead of precariously splitting pills and wasting them for the best part as well if they do not break properly.  The more parents accept the pills, the less demand there is for the manufacture of a syrup either.  I'd be quite happy to have my child on tablets if they were more tapered to his needs, but they are not and I see a distinct trend to tablets since the recall of syrup by UPJOHN, and no solution being looked at in real terms where this is concerned.  So are we going to see children not reach their final height potential now because of periods of over and undersuppression due to not being able to get closer to their natural needs for cortisol?

 

Concerned