Re: - Kids who have no or little oral feeding-?'s

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I am sure it must be so amazing to see her start to eat something. A goldfish is quite an accomplishment! I really appreciate all your help. Thanks. Darla Re: Re: Kids who have no or little oral feeding-?'s Hi,My little Niki has been through the same thing. She stopped eating when she was nine months and weighed in at a whopping 11 pounds. At that time no one knew she had Complex one so after several talks with the Ped, GI doc and Neuro along with extensive testing we decided to do the tube that went through her nose. Well that just wasn't cutting it for any of us she was still losing weight and pulling it out of her nose. AT the same time the doc's were trying to figure out if we should be a muscle biopsy because they had no idea what was wrong with her. Anyway to make a very long painful story short. She had he first Nissan Fundo at the age of 1 on her b-day actually. It was horrible apparently 7 hours in surgery wasn't helpful in finding out had a hole in her diaphragm and a hernia right next to it. Okay so now starts the retching it was so bad I would cry with her. It was as if she was seizing and I mean all the docs saw it happen but not one of them new what was wrong. Okay so finally her surgeon listened to me and agreed to do a test to see what was going on in her little body. That was 2 days before x-mas. she was back in the hospital one week later on 1/8/02. She was in surgery for 7 hours again and he came out and said it went well this time but that her fundo came undone and that was causing the jist of her problems and closing her diaphragm and removing her hernia. Now she still retches but they put her on a higher dose of reglan and if I tell you it is like a miracle she has 1.7 mls three times a day and it helps her so much. Her main problem is that regardless of any meds if and when she catches a cold she still retches really bad it is as if her body slows down so much nothing helps her. She is now 4 yrs old and still doesn't eat by mouth. However all the docs are against me removing her tube at any time only because it seems to them the one thing most affected by her mito is her esophagus as well as her stomach. But you know just today she had goldfish, my mom (who watches her during the day) called me crying because she ate a gold fish.