VoyForums

[ VoyUser Login optional ] [ Contact Forum Admin ] [ Main index ] [ Post a new message ] [ Search | Check update time | Archives: 1, 2, 3, [4] ]

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Date Posted: 22:47:51 10/05/02 Sat
Author: Wife of Tall Texan
Subject: What is congenital myopathy, unspecified?

Sigh....We have another family member with an "orphan" disorder. My grandson (not related to my hubby with Marfans) has just been diagnosed with congenital myopathy, unspecified. He's five years old.

He has always had difficult with fine motor control, and he "compensates" to handle his gross motor control (like scooting up steps backwards on his fanny). He was nearly four before we were able to completely potty-train him. He used to have severe breathing problems, but we had always atrributed it to the air pollution here in Dallas. We also have a long family history of asthma, so we never dreamed it was something else.

We are told he will be transferred to Children's Hospital Boston's outpatient clinic. We are also told this is not "curable", but is treatable. What does that mean in a five year old? Will it get worse, or remain the same? Anybody have experience with this?

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[ Contact Forum Admin ]

Forum timezone: GMT-6
VF Version: 2.94, ConfDB:
Before posting please read our privacy policy.
VoyForums(tm) is a Free Service from Voyager Info-Systems.
Copyright © 1998-2008 Voyager Info-Systems. All Rights Reserved.