I couldn't believe it when I found this website. This I am hoping will answer some of my questions I have had for a long time.
My 5 year old son was diagnosed with CED when he was 3. It is so hard for me to imagine what he goes through everyday. In reading some of your blogs I actually wish that I could trade places with him just to know. He explains the pain like an Alligator or a Shark is biting his legs.
I could use all of your help in knowing what the best thing a mom with a child with CED could even do to help. Leg rubs? Hot pads? baths? I am not sure if this helps at all.
Nathan is on Prednisolone and has been since January of 2006. It was like a miracle drug. He was a new little boy. Doing things he was never able to do or had any interest in doing at all. He is tappering off it now. You can definitely tell the difference too.He has reverted back to almost the same stage.There is not a lot of studies of CED children this young being on it for prolonged periods of time. Any of you?
I am so interested to know your own childhood histories of this disease. I think I may learn here more than at his hospital. (I am still trying to be optimistic about that whole thing)