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Danny had his nutritionist appointment this morning...he has lost an entire pound since his last visit which was about a month ago. According to the ped's scale he was the sameon Friday so it seems like he has lost the pound since Friday... He is only eating between 1024 and 1156 calories per day again so the nutritionist is trying him on Elecare and E028 Splash to see if he tolerates them. We are also doing DuoCal to try to get as many calories as possible and she is going to talk to his GI to see if she will do a scope and biopsy before asking us to start the gluten free diet since his biopsies have always been normal. I just bawled. She said that I am doing everything right but that we can't force-feed him. She doesn't know what to do anymore. I have heard that before but this time it cut deeper for some reason...
I'm sorry I just lurk on this board mostly. I do have a special needs little 4 year old that has real issues with his weight. He is autistic and has lots of other delays. We changed his diet to a glueten and caesin free one and it has done wonders. He is still really skinny, but he isn't LOSING anymore. I hope all the additives work for you guys!!
The periactin worked for about a month. They had us cut it back out for a week to see if anything changed and his diet plummeted again. We put him back on it over a month ago and this time it has done nothing... The GI's office called this morning and wants to see him before we leave...aka before Monday afternoon. At least they get the picture that this isn't some wacked out mother moving her child from office to office just to hear what I want to hear...I think she is realizing that something really is wrong here...which is what I have been telling his docs all along... I called the nurse back but had to leave a message because she wasn't at her desk. The appointment lady wouldn't do anything else because they are working him in to a double booked schedule...can you say we are going to have a long wait? I am just glad we are getting in. They are also calling prevacid in for him to see if that helps. He has been complaining about "the frog in his tummy" a lot lately. He tells me that the frog in his tummy is trying to make his food come back up. He had only said it VERY rarely so we weren't worried about it but he says it more often and when I ask him he says the froggie is mean a lot. So now we are adding yet another medication to the list... I just hope something helps...
I have no advice really. Just wanted to offer some
Did he come up with the "froggie" in his tummy? I kinda like that description. I really hope he feels better soon and you can get something figured out.