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Patti

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Patti,

I was way behind on posts and just read yours about me, thanks for thinking of me, it was very thoughtful!!! The babies skin problems have been diagnosed as eczema and is being treated with 2.5 percent cortisone cream. We put it on him 1 or 2 times a day all over his body and it works no more rash. I do worry about all that cortisone, but the doctors do not seem too. Hopefully will out grow it and not need it forever. A lot of times I do not post, not enough time with five kids, work and PSC. I always read the posts even if I am weeks behind you guys are like part of my family.

As for me I have been having my first real signs that I have this ugly disease. I was diagnosed from high liver enzymes and no symptoms. Since October I have had really high enzymes, itching, pain in my right side, FATIGUE, and bruising (anybody know what could cause unexplained bruising). I know that PSC can get worse after pregnancy, I am hoping this is the reason why I am having trouble and I will go back to normal soon.

I hope everything is going good with you and your family!

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  • 9 years later...
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hi Patti,

it is so wonderful that there are people on the site on behalf of their parents.  It's a confusing enough disease when you're young enough to find things out and research for yourself, let alone complicated by aging changes.  Apart from the antibiotics what treatment does your Mother receive - any physio, any aids to help her clear her lungs?  Does she cough up much, or have a really rattley, wheezey cough, and short of breath?I understand about the fresh air, and it certainly is better than stale air for sure, but from own experience a sudden hit of cold air can affect lungs adversely - for me, even a direct aircon draught will make me start coughing up.  If cold / damp  I keep ventilation indirect, via another room with open doors etc, where possible.How about your Mother's weight, has she been encouraged to use dietary supplements, or even a glass of stout (maybe that's a bit English!) anything to help stimulate appetite.  Sometimes finding small remedies can make enough improvement to give a better sense of wellness.thank you for caring for your Mother,Joy H Happy breathing  JJoy -- -- "Wealth is nothing, position is nothing, fame is nothing.Who you become inside is everything.What happens to you is not as important as how you react to what happens."

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