Hi Anne-Marie,

 

 I think you may have misunderstood part of what I was trying to convey. I certainly double or triple my son’s hydrocortisone when he is ill - always have and always will. I know that his body is stressed and that he is not able to make enough cortisol on his own to cope with illness and that his usual doses are just replacements of what a healthy child would make.  I would never leave him under-dosed and suffering with a high fever. He is young enough that I can still "half sleep" with him when he is ill so I can keep close tabs on how he is doing, amd give him extra medication in the night.

Regarding febrile convulsions, I don’t mean to "pick at straws", but as I understand it (and I could be wrong), febrile convulsions are not really avoidable - if your child’s temperature rises at an extremely rapid rate, you don’t really have enough time to first notice that your child even has a temp and then give medication and have it absorbed in time for it to take effect. Convulsions are not related to how high the temperature reaches - just how quickly it  rose to whatever level it reached.  

Irregardless, I would imagine that a febrile convulsion would be more stressful for a child with CAH, and although we cannot prevent the convulsion, we can keep our children stress dosed so that they will be better able to handle a convulsion should one occur.

I do still have to "wrap my head around" the issue of giving fever-reducing medications. I will certainly consult with my son’s endo regarding this. I don’t know for sure that a CAH child’s immune system would not have the usual built-in mechanism to prevent an infection-induced temperature from reaching 106 degrees ( the danger-zone). I don’t want to risk my son’s health though because of my "anti-medication" philosophy (I do put up with wicked headaches and fevers of my own from time to time and always without medication- For my children though, if they are truly uncomfortable I would give them something to help the pain.I don’t just give it automatically for all fevers.) Thanks to everyone for their input. I appreciate the insight. If I find out anything newsworthy from our endo, I’ll be sure to post.  Jill T