Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Hi Marie, My son, Asher, whom you know from the old benign congenital hypotonia list has had problems with growth and weight gain. I don't know if it fits what you are dealing with with your son, b/c Asher's problems seemed to stem from his GI dysmotility which was keeping him from eating. We went the Periactin route and Ash tolerated it just fine but it did not increase his appetite at all - or, should I say, it may have increased his appetite but the uncomfortableness from his GI problems still kept him from eating. I have heard people say to increase the Periactin in gradual amounts as it can cause behavioral changes (I never saw any in Asher). Anyhow, b/c of all these problems, Ash ended up with a G-tube in early March and, for the first time in his little life (3 yrs.), he actually seems to fill out his clothes (granted they are still for 18-24 month olds, but, at least, they don't hang on him). We go back to the ped gastro in mid-April and should find out if he gained any weight (I think he's gained about a pound at this point). I've thought about you often. I appreciate you heading me in the right direction and getting me hooked up with the mito list as that seems to be a strong possibility of what we're dealing with. We should know in a few weeks. How are the rest of your children? I know you may be too busy to post or in too much pain b/c of their illnesses, but I want you to know that I am thinking about them. All the best, Anne R Quote Link to comment Share on other sites More sharing options...
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