Wednesday, April 25, 2012

Boy on TSW : he wants to awake from a coma and be done with this


Not trying to scare you but trying to make some of us THINK HARDER!!

His name is Z and he says "he wants to awake from a coma and be done with this"

This is his story from his mother :
Unfortunately, he has been on steroids since he was about 2 or 3 months of age. He will be 13 in May. I have always been searching for ways to handle his eczema better but have never come across anything about topical steroid addiction until last month. Reading Kelly's page and Dr. Rapaport's article was as if they had wrote itabout him. In fact, the night I found it, I could hardly sleep because for once, I finally had hope for him! Originally we did start out on low dose steroids... however they were steadily increased when they "weren't working anymore." For the past couple of years I have been telling the derms that we need to quit putting bandaids on the situation and figure out what is really going on... that it continues to get worse even though they are using the strongest steroids out there (Z recently had another three week round of prednisone and was on clobetasol- the strongest ointment out there). The derms said that sometimes eczema changes course as they start getting close to puberty and that could be why he had eczema all over his body- especially his rear end, thighs and face. Finally they suggested that maybe it was time to go over the hill to UCSF or to a derm in Oregon. Believe me, I am sick about what he is going through. I always knew there had to be something more to it than him just hitting puberty as we are such sticklers on everything we do to control it (removal of carpet, air purifiers, humidifiers, showers nightly, creams/lotions, restrictions of friend's houses he could go to, allergy shots, etc) that I knew we were missing something because it just kept getting worse. I just thank God that I finally found Kelly's website... wish I would have found it years earlier, and will do all that I can to help others out there in similar situations find out about this sooner than we did. Again, thanks for the support everyone. The damage that steroids cause is truly a crime and needs to be stopped!

1 comments:

  1. Nice blog my friend. Keep up the good work! Love you!

    ReplyDelete

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