Hi Susan,

I am so sorry to hear of all of your problems.  I must say though that your child’s story rings a distant bell for us.  We went through almost exactly what you are going through when the liquid cortef was bad (over 4 years ago).  My son was 4 - 5 years old when we finally found out that he wasn’t getting any even close to his proper dose and was grossly under suppressed.

When our old ped endo figured it out he switched my son to prednisolone.  He was soon severely over suppressed while we tried to titrate his meds.

I remember that my son began making an annoying sound with his throat.  He felt like he had "somefing on my froat" and it seemed to make him feel better when he cleared his throat.  His gag reflex went into overdrive and he would startle very easily.  I cried myself to sleep many a night worrying and wondering what to do for my child.  He was just starting kindergarten and had previously been so excited to go to the same place his sister went to.  Anxiety had crept in as well as mood swings and frustration.

Long story short, we went to Cornell and, after switching him to cortef and titrating his doses down to an acceptable level, he seemed to slowly come back.  The throat clearing stopped (thank goodness) and he seemed to become more comfortable with himself. 

Susan, please keep in mind that anxiety has been listed as  a common symptom of CAH (by many parents on this board in fact) and can be exacerbated by under or over suppression.  She may indeed be going through a little bit of a withdrawal due to lowered doses and/or a change in her dosing schedule.

If you couple that with the fact that kids tend to go through a bit of anxiety naturally at just about 2nd grade how do you know which end is up?  Our school nurse says that she has more "visits" from 2nd graders than any other group of kids and it is just an age thing where separation anxiety seems to re-visits these youngsters.

Good luck.  If you will be attending the New England/NY,NJ - et al area gathering this summer perhaps we can talk about it more in person.  Until then, feel free to email me.