Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Hi e, I know about being the only one concerned - that sure happened last year but then Asher went downhill so quick that my husband couldn't ignore it. The ped gastro even rushed us to the ER once. In terms of the weight thing, I think what's important is what the labs say as well - Asher was in ketosis b/c of the malnutrition as well as having other amino acid abnormalities (some directly from the mito and some from the malnutrition that resulted from mito's damage to his GI system). Constipation is a major major issue for Asher. It is related to his dysmotility. He cannot seem to poop without a suppository - so we give him one every 3-4 days. We do this to avoid him having to take Reglan b/c of it's potential neurological side effects. Don't know what we'll do as he gets older! I don't want to be sticking suppositories in a 6 yr. old! Laxatives don't work b/c his poops are already soft from the carnitine supplements. Anyhow, hope your appointment for Devin goes well. Anne R mom to Ash (3 1/2 - mitochondrial disease - complex III defect and possible complex I defect) Quote Link to comment Share on other sites More sharing options...
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