Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 Hi, I have a son who will be 3 in February who is having a muscle, skin biopsy done by Shoffner as well as a spinal tap (all of this to be done in January b/c we're trying to rule in or rule out mito and other metabolic myopathies as well as congenital myopathies). My son has had hypotonia since birth, but what is really concerning now is his failure to thrive issues (dropped off the growth chart where he used to be at the 75th percentile in height and weight) and he loses weight when ill. He gained a pound of his lost weight back but has not gained anymore. He is on Periactin as an appetite stimulant. Prior to his recent gaining 1 lb. back after losing it, we were days away from an NG tube which would move to a G-tube if he didn't start eating more. My questions to you are: 1. how did you make the decision to go to a g-tube or some other medical feeding system (other than eating!) ? 2. how old was your child? 3. what kinds of complications did you run into with the tube, button, etc.? I'd really like to hear your stories as my husband and I struggle to make a good decision about our little guy. Thanks, Anne R Quote Link to comment Share on other sites More sharing options...
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