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| | | NEXT MESSAGE  | | | | | AUTHOR: | Alexandras-mom | DATE: 02/01/04 11:16am | | SUBJECT: |  Low Muscle Tone, Reflux and Feeding Tubes | | | Hi,
I am new to the site and trying to find someone with a similiar situation. Sounds like there are a few people out there that posted a while ago - any updates? My daughter just turned a year old last week. She has been on a feeding tube since she was 2 months old because she slowly started to refuse to drink enough and then stopped all together. She has had a G-Tube since June. She has reflux and has developed an aversion to swallowing anything but her saliva. We have also been told she has "low tone" and have had a zillion tests (genetics, muscle biopsy, mri, eeg, etc.)and thankfully all results have been negative with the exception of the upper GI that showed reflux. In addition a sleep study showed some sleep apnea and low oxygen saturation (88%) which they attribute to low muscle tone. She sits up but does not crawl or walk. She just started to stand if you hold her hands (she used to refuse to bear weight on her legs and still does not like to be on her tummy). To me she seems physically delayed by about 3 months but does seem to improve a little as the weeks go by. She goes to PT and OT and we continue to try and find out why she refuses all food and liquid. She also throws up at least twice a day. Mentally she is fine. We have been all over to some of the best hospitals but really no one has answers. Our next step is to wait a couple of months and then try to get into a intense feeding program. Mean while we continue with PT and OT. We are always seeking new insight. I would love to hear any updates. | |  | |
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