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Post by Amy Lombardi on Apr 1, 2009 9:13:24 GMT -5
Subject: jncl Name: yvonne cancio Date Posted: Jan 17, 09 - 11:20 PM Email: Click here to Email Message: The latest on my Brittany is that she has a leaky heart valve and her liver is huge.Test are being run now.The dr. suspects hepatomegaly. Has anyone had this in the disease? She is now 15 and can only see light and dark, has no energy,falls down alot and has regressed mentally.Please respond.Thank you.
Name: Nancy Peterson Date Posted: Jan 21, 09 - 12:01 PM Email: Click here to Email Message: Yvonne, I have never heard of a Batten child having that issue. It could just be something she has that is totally non-related. For her age she sounds about right in her progression. The energy issue may be from the hepatomegaly. Another reason could be dietary. Check with your doctor. He/she has probably run all the tests that would indicated an additional cause for the fatigue. Falling down is Battens as well as mental regression. This is the age when the progression increases. Make sure, if you haven't already done so, to get a wheelchair, and necessary safety railings in your home. We had a banister railing put in our long hallway. It really helped. Same in the bathroom. Check with your doctor about having a home visit from an occupational therapist to assess your needs. I hope they figure out the other issues soon. I always recommend medical questions be directed to Nancy Carney the Batten Nurse. She is fantastic. Her number is on the contact page. Hang in there, Nancy
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