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Hello, my name is Sarah, mommy do Danny who is 19.5 months. I am new to this board but not to weight issues. DS has lost weight and themn gained weight and then lost again. Right now he is almost 2 oz. less than he was in Oct 08 due to weight loss. (He is 21 lb 8 oz 31.5" long) This wouldn't reaaly be an issue accept that we have done two food diaries and he is getting 1300-1800 calories per day and STILL LOSING WEIGHT. He saw a GI (two of them) last year for reflux issues and found out that is acutally allergy based. He is allergic to milk, soy, tomatoes, carrots, and eggs. That has solved a lot of the issues...we think. He had been pooping 5-6 times everyday just like a newborn. Same texture and all. Horrid smell though. We have three in diapers at my house and you always know when it is him simply because of the odor. When he went to the GIs last year it was all upper digestive testing. He had a barium swallow, 2 ph probes that came back abnormal but that he was vomitting bile mucous and food(due to allergies), and an upper scope and a biopsy. We are seeing a nutritionist and the allergist currently which is how we know about the calories. He has been tested for CF once and are going to test again if he doesn't start getting better because his score was 39 and if it is 40 it is considered a borderline reading.
My question is where would you go next? With 1300 calories on a slow eating day and up to 1800 on a hungry day, he is obviously getting enough to gain weight! Neither the allergist or the nutritionist have any idea what to do. Would you guys go to a GI for lower digestive testing. The only reason I don't want to is because I know he will have to get a scope and I know that will hurt. I want him to gain weight and know that all of you have experience with this sort of thing.
ANY ideas would be GREATLY appreciated as we are running out of options and DS is now losing an average of 2 oz a week. PLEASE give any suggestion that you can think of!!!
BTW he is on rice milk....just incase anyone was going to ask...
Wow! I really wish I had something more to offer but a warm welcome and a hug. My daughter was tested for CF, but it came back completely negative and her problems are nothing like what you described. The excess mucus and the score would concern me though. I would definitely go for a lower GI (can they give him a sedative?) and another sweat test. I wish you and DS the best. Keep us posted.
((((Hugs))) I Am so sorry hun, I would also demand that CF test redone, if it was THAT close to borderline, it needs to be redone. I wish I had more advice for you, Abbey is 8mos and going through a bunch of testing as well, so far it has all come back negative tho, it is very frustrating. I hope you get some more answers soon. Please KUP