I am the mommy of 2 girls (8 & 6) both with ssw cah.  We were talking today about what it feels like to be so sick you need to go to the hospital.  They both told me when they get to the point they need to go to the hospital (which now they are starting to tell me it is time), they feel weak, wobbly and like jello.  My oldest said she feels like she is on the Sea Dragon ( a roller coaster) and she can’t get off.  I asked my oldest, who had an ambulance come for her at the end of June, if she knew that Mr. Kevin (our neighbor- my husband was at work) took her out of bed and carried her out because we couldn’t wake her or get her out of bed.  She said, yes, she knew and she was awake, she just couldn’t let us know she was awake and that her eyes would not open.  She was unconscious and non-responsive but she said she remembered everything that happened- she just couldn’t let us know.  She told me things that happened in the ambulance so I know she knows.  It is just weird because she was "out" the entire time.  She said she felt very warm and happy and she thought about Tucker (our black lab)  I asked them how they like their new 6 hour dosing.  They told me they don’t feel as cranky now and they feel like they have more energy.  They thanked me for doing that.  Wow!  How lucky am I!  I am so glad they are able to articulate to me how things are in their world.  That is the hardest part of being a CAH parent. 
I just thought this would be interesting to share.  We have always been very open abd communicative with our girls about everything but this is the first time they have shared so deeply with me.
Blessings to all,
Tonia