Tonia,  I can’t help but feel so sorry for you.  I know the feeling of having something like this go through the family one after the other.

I am a FIRM believer that not ALL SSW CAHers respond the same.  My son has always gone down rapidly and had several close calls in the ER.  We now know better and give the shot as soon as we are sure he is getting sick.There was only one time that my son had gotten sick where we gave him the shot and kept a vigil over him at HOME and I will never do that again. 

By the third day (even with triple meds and the shot) he was so sick he had turned a mottled color of bluish purple.  I rushed him to the hospital where they told me that they weren’t sure he would make it.  He had gotten so dehydrated that they couldn’t even get a line in to give him fluids.  They had to drill into his bones and infuse it that way!!  He had gone into hypervolhemic (sp?) shock! 

The doctor pointed out that when people are sick sometimes their stomachs shut down and can’t absorb the oral meds.  He also pointed out that even if those meds were working, he was still not re-hydrating himself because he wouldn’t drink anything and he had lost a lot of fluids through the high fever and diarrhea.

Do you think it would be possible for your endo to admit your children into the hospital to give them IV fluids and help manage their care?  I think it would give you a little peace of mind and you would be erring on the side of caution.  Remember that these kids can’t fight off one infection let alone a double infection and mono!

I am willing to bet that the shot you gave your child really did make a difference but your child was just so sick you couldn’t notice.  Remember that giving the injection and/or tripling meds is a must but so is re hydration especially in the children who are on the high end of SEVERE salt wasting.

I am sorry if I seem overly concerned but my experiences with my SSW CAH son prevents me from feeling anything else.

I don’t remember where you live Tonia.  If you are anywhere near CT I would be happy to come to you and help you in anyway I can.  I am very worried but will continue praying for you all.  Please feel free to contact me if I can be of ANY help at Ltorony@charter.net.