Posted by patti on 6/30/2008, 8:48 pm, in reply to "HELP"
69.116.235.119
Scott,
My son Mark is 7 and has ags. He has had to wear glasses since the age of 2. He is far-sighted. You will need to go to a pediatric opthalamologist.
Mark didn't have surgery, though. He had pneumonia at age 4 months that required hospitalization. I do not know if the pneumonia had any affect, he also has speech problems. The pneumonia almost cost him his life.
Ags also is known to cause vascular problems also. I found that out when I questioned why a lot of his veins are so prominent on his body.
Alagille doesn't affect everyone the same way. Some suffer the liver/kidney, some the cardiac, and yes, some have vascular problems. And some just have mild forms where it can even go undetected.
My son is more the mild case.
Peace,
Patti, Mark's mom
--Previous Message--
: My son Adam age (3) just had two sided pial
: syngosis surgery at Childrens Hospital
: Boston under the care of DR M SCOTT. After
: the second side surgery Adam suffered
: several strokes and now has vision problems.
: I am asking parents of alagilles children if
: they have had this problem after surgery,
: and what type of Doctors you saw for the
: vision ??
: THANK YOU. MY computer is also not working
: properly and I am in the process of geting a
: new laptop. So my CELL phone number is
: (508)-212-5583.
:
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