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Hello Everyone,
My son Connor has Evans Syndrome (thrombocytopenia, hemolytic anemia), hypergammaglobulinemia, Ehlers-Danlos (connective tissue disorder) and splenomegally. He will be 10 in March. We have been fortunate that to date he has had a fairly mild case of Evans.
In September, 2003, his ALT (liver enzymes) began increasing. Normally 0-60, his spiked to 750, at which point a liver biopsy was scheduled in December. By the time of the liver biopsy, his ALT had unexplainably dropped to around 250.
The liver biopsy didn't show much, so it was decided the ALT spike was related to autoimmune hepatitis.
Does anyone else know of liver problems associated with Evans?
Thanks,
Rob (father to Connor, 10)
-----Original Message-----
From: Marlene M Pritchard [mailto:opca@...]
Sent: Friday, February 13, 2004 7:03 AM
To: EvansSyndrome@yahoogroups.com
Subject: Re: [EvansSyndrome] Rotoxin?
From: Marlene M Pritchard [mailto:opca@...]
Sent: Friday, February 13, 2004 7:03 AM
To: EvansSyndrome@yahoogroups.com
Subject: Re: [EvansSyndrome] Rotoxin?
Dear All,
We have no experience with rituxin (Nick - 19) but many on the discussion
board have been helped by using it.
Jeff, I'm so sorry about Annie. Uniqueness is not always a blessing, is
it? Our rheumatologist diagnosed Nick with Lupus in the summer and also
mentioned it could be connective tissue disorder. My understanding of
connective tissue disorder is that it is a much more broad collection of
auto immune symptoms. I'm curious to know if that has been mentioned in
Annie's case. There is a little girl in the school where I am principal
who has been having strange, unique symptoms and they have finally
classified her as having connective tissue disorder. On one hand, I don't
think the designation matters - the symptoms are nasty (in her case 60%
of her lung capacity has gone forever due to scarring and damage) and the
treatment the same as the other auto immune issues.
Marlene
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