It pains me to say this as I realize that a great volume of children were seriously affected by the UPJOHN syrup but when something is 'mass' produced with preservatives added, it is rather like the difference between good home cooking and buying stuff off the shop shelf.  You don't know exactly what has gone into the shop bought bakes and they may have a longer shelf life, but if you make it at home, you can ensure that only vital ingredients go into it that are necessary.  Many children had their health deteriorate and some children died and I realize this much, but this issue needs to be addressed urgently.  Within a pharmamcist's training, they are not only taught  to order and stock and sell medicines, they also are taught how to prepare them too.  All it takes is a basic recipe and time.  As we will all realize there was a mistake with the mass produced syrup, but it can never justify children being put on tablets doses that are simply not designed to fit their requirements.  I'd like to say here that my child was on 10mg HCT per day when they switched him/her to tablets.  Because of this and the fact that he/she was a toddler and eating, they decided that crushed tablets would be good.  However, children have this habit of growing and he/she did and consequently, needed a dose raise.  Because tablets can only be split accurately in half---and there seemed to be this bias against the syrup---they raised his/her dose 2.50mg.  Bear in mind at this point that this is a 25% raise.  We are not talking about just tweaking a childs dose here, we are talking grossly over suppressing a child.  His/her bone age xrays where immature for years. It took him/her years to catch up to that dose and he/she grew painfully slow.  His/her bones where so affected, the arches of his/her feet are totally flat and his/her ankles point to the floor!  When he/she did finally catch up to this, they raised it again another 2.50mg.  Not quite as bad this time---only 20% more but still enough to hamper his/her normal growth again for many years.  Still, eventually he/she caught up with this dose and surprisingly was still healthy.  In all this I was just an ignorant, naive parent---as one person so eloquently puts it---a lethal combination :  Doctors who were doing all the wrong things and a parent not knowing any better due to ignorance and lack of education!  So an expert was consulted, but by this time my child was growing into their 15mg dose and finally starting to grow. What did the expert do?  Dropped the dose by 2.50mg = 20% !?!?!? I wanted to diagree, but he was sat there with his fancy calculator and looked important and like he knew what he was doing and so I didn't!  Three months later, we returned to see my childs normal doctor and he said my child was doing so well we needn't see him/her for 6mths.  I was concerned and mentioned that my child had BO, but this did not alert the doctor dealing.  My child 'should' be sweaty at this age (then 8!!!) he said, and so we went home.  (I kick myself now and wish I had argued with him but I simply did not have the knowledges that I have now).  My childs levels at the next appointment 6 months later were so far out (15,0000 ng/dl (?) was the 17 OHP result!) that they had to take drastic actions.  We are now back on the syrup made locally and all I can say is this:

I have seen many messages going down on this board to mention children on pills and about cutting them and that they are on 2.50mg here and there.  The nature of CAH is that once your child is fine tuned---they only should need small increments in doses to tweak their needs every now and again.  My child has just done a big zizzag in terms of physical and mental deveopment and I don't want to see other kids follow in his foot steps.  Please have the courage to disagree with doctors if they say and do something that you feel may be unfamiliar.  I didn't and recently I have felt very depressed.  Then that I need to be 'so' knowledgeable about CAH that I need to know as much as the doctors treating him then I can know the difference in when they do sensible things and not so sensible things.  Trust your local pharmacies and for your childs sake insist on their medications being syrup.  It may only have a shelf life of a week like good old fashioned home cooking as a short shelf life, but it is so much better than the mass produced stuff and tablets.  Until these manufacturers and the Ministry of Health in each country realizes the need for tablets to be manufactured to cater for smaller dose (i.e. 0.1mg and 1mg tablets) we need to all think more carefully about what we give our children each day.  We are only supposed to be replacing as near as damn it the amount that our children cannot produce in the way of cortisol and until such time that the above is done, the more accurate way to do this is syrup.  Please can someone contemplate approaching the 'Magic Foundation' about this issue.  Perhaps they can address it at the next conference.

 

Concerned