Things are better, but still not better.
Claire's liver numbers are still coming down, but not normal yet. Her rash is still hanging around and I don't know if she just forgets then remembers about it....but that come and go thing even throughout the day is still part of it. Whenever she's getting her diaper changed or getting dressed in the morning or ready for bed at night, she gets really bothered by the itching and demands lotion. And how she loves to be rubbed down with lotion! She soaks it right up and always asks for "little bit more" upon completion! Her bath tonight was short lived. She usually loves playing in the small amount of water she's allowed to sit in, but with the rash, all she can do is itch herself and end up frustrated and crying because of how itchy she is!!
Thanks to everyone for your thoughts/insights/ideas about the rash. Good to get others experiences. Hopefully this mystery will be solved soon!
Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.
Wednesday, February 3, 2010
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3 comments:
Hope things are better better soon.
For what it's worth, three of my girls just got over a bout with that viral wonder, Fifth's Disease, which gave them a rash (it often appeared worse after bathtime and just before bedtime, and my 3 yr old itched like a demon!) that seemed to come and go. It eventually went away, but not before we changed fabric softeners, gave benedryl, lotion every night, Aveeno baths, cut fingernails, etc. Oh, and it seemed to go away and then came back a few days later almost worse! Then it got better.
Hope you are able to figure out what's going on! Good luck.
Thoughts and prayers are with your family. Hope everything is ok with Claire.
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