Parents and carers
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aimeyladyaimeylady Member Posts: 10 Listener
edited May 2014 in Parents and carers
My 6 month old recently had a PEG-J fitted at GOSH and I'm so worried we are not being given the best advice. Evie has had trouble putting on weight since birth, though she was full term she has struggled and now only weighs 5.8k and is being fed with infatrini peptisorb 2 wks ago we had a peg fitted with a jejunum extension, so her medicine goes into her tummy and food into her intestine. Those of u in the know please let me know if u know of a smaller sized tube as Evie has a size 15 tube for G tube and size 9 tube inside that one going into her jejunum is this the smallest possible for this kind of tube? Also Evie is far more twitchy, uncomfortable and her arms and legs move with far more distress when fed into her tummy, so when she was NJ fed she was so calm and happy, with this tube she's very uncomfortable and I worry we've done the wrong thing! Also the tube that goes into her jej is so big it now blocks her tummy from emptying and I have to drain the gastri juices that build up from her g tube and pass them down her J tube! Just horrible, I have to do this every 4 hours and I get around 20 mils! I just feel like its wrong and I don't feel I have had enough consultation or information about it! HELP xxx


  • rosielumleyrosielumley Member Posts: 4
    Hi Aimey, My daughter Emma has Dyskinetic CP from a birth injury. She just about managed to bottle feed as a baby but couldn't eat solids at all and at about a year old her weight dropped very dramatically. she'd been on the 25th centile mostly but then dropped off the bottom of the charts, so she had an ng tube put in and then a peg afew months later. She turns 3 next week and has had her peg for 16mths. She is on the 50th centile for weight and somewhere near the top of the charts for height.
    Its definitely preferable to have have a peg than an ng long term, ng tubes will cause irritation to the stomach sooner or later so really a gastrostomy is the only choice. I know when they fitted Emma's they said the peg can alter the shape of the stomach making reflux worse, does Evie have reflex? if so are her med's maximised? Emma does still have reflux but it's so much bettter than when she was a baby.
    I don't know much about jg tubes but it doesn't sound like it's positioned correctly if her stomach can't empty properly. There is a facebook group called feeding tube awareness that has 1000's of members who have lots of experience and information to share.
    what has made the biggest difference to my daughter is taking her off formula and putting her on a blended food diet, essentially just food down her tube. It has resolved her constipation and taken her from the bottom of the weight charts to the 50th% and she is just much more comfortable in herself. If you are at all interested in this hear are some links;
    youstartwithatube blog
    blended diet uk facebook group
    blenderized food for tubies facebook group.
    There's also a book called 'complete tube feeding' which is excellent.
    Hugs to you, your family and Evie xoxo
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