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Posted by juliana
on 10/3/2008, 6:15 pm, in reply to "22Q11-DI george"
194.176.105.47
--Previous Message--
: Hi my daughter was 7 wks prem so only
: 3lb and born with tof and absent
: pulmonary valve syndrome and was a
: very poorly girl for the first 8mths
: of her life. She is now 11 and half
: mths and feeding is a real battle
: with her, she was ng tube fed up
: until 4 wks ago and didnt start n e
: thing orally until 7mths old. But i
: find all savoury foods she gags on
: and puts food in her mouth and spits
: it out again i feel its pointless as
: we dont get n e where! has any one
: got any advice for us as i get so
: frustrated with her. Apart from that
: shes such a loving little girl still
: very tiny but doing well since we
: had her home 7 wks ago xx
:
My son Joshua was also born 7 weeks premuturely with TOF. Is your daughter seeing a cleft and palate team? My son still has the same problem and he is being refer to a feeding team. the cleft and palate team diagnosed him with a submcous cleft palate. The muscle of his digestive system also immature and he do not know how to move the food around in hismouth. That's why they gag as soon as the food reaches the back of their throat. Joshua si now 2 years and 9 months and is still on savoury jars we are trying slowly with regular food. Their is still a lot he cannot eat, just because he does not know how to. Eating and digesting food does not come naturally for him a person needs to teach him how to bite otherwis he will just shuff everything into his mouth. About two weeks ago he master the art of eating a banana. He still cannot eat any other fruit because he does not know what to do with it in his mouth. Is your daughter vomiting through her nose? The other thing with them is that they do not put weight on easily, for some reason the fail to thrive. Joshua was breastfeed but we had tosupplement his feeds with high energy feeds.It never mattered how much we feed Joshua he would never pick up weight. He ones picked up 20g in twqo weeks time. Whe I started with the savoury jars he did the same thing as you daughter, I would then leave it for a couple of weeks and the try again. When we started with the bits the gagging and vomiting started all over again, I had to go back to the puree and just tried everytime untill he knew how to move the food in his mouth. the specialist nurse of the cleft and palate team insited that we continue with solid feeds even though Joshua would empyt the contents of his styomach through his nose.I couldn't do that because it means he would lose more weight. So I just followed Joshua's pace. Joshua also suffers from chronic constipation. I think its all part of the underdeveloped muscles in his digestive system and that's why peristalsis is slow.
One time he vomits 6 hours after having solids and the food wasn't even mixed with stomach juices, which means that digestion did not took place yet.
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