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  1. #1
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    Default Any tube feeding mummies around?

    I have a few questions if there are a few about getting a button. .g tube for my 20 month old. ..
    Like at what age did you get it done?
    What kind? PEG..Mic-key. .etc
    Do you do a blended diet?
    Recovery time. ...

    Anyone out there in BH land?

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  2. #2
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    Hi, our 13 yr old DD has a mickey button. I don't have time right now, but will come back tomorrow & reply in detail.

    Recovery was quite quick, and we give her a blended diet. Look up Blenderized Diet for Tubies on FB for some helpful info.

    It was scary at first, but really not so bad now.

    Big hug!

  3. #3
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    Thanks for replying!

    My DD has a syndrome called Smith-Lemli-Opitz syndrome. She's managed to feed orally since birth with a few stints with ng tubes around heart surgery times.
    We're at a crossroads where we can persevere with oral feeds... Plus she drinks pediasure. . But not much. She's very borderline and can go days. ..A week. . Without eating anything.

    It's really a choice for us right now and I'm just looking for insight and experience to help weigh up the pros and cons. The majority of kids with her syndrome have been tube fed since birth.

    I really appreciate you taking time to chat. xo

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  4. #4
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    Anyone else?

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  5. #5
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    Sorry it took me a while to get back to you.

    Our daughter has Rett Syndrome, and it is common for Rett kids to have difficulty putting on weight and/or developing swallowing difficulties, so they often end up with feeding tubes.

    DD was 9 when she had a g-tube placed. At the time she was extremely unwell as a result of aspiration pneumonia, her weight had dropped and she was very very thin. For some reason they were unable to insert a nasal-gastric tube, it kept coiling up at the back of throat and wouldn't go down so she had to have the feeding tube placed as an emergency. It was all very scary as they were worried about the effect of the anaesthetic on her already compromised breathing and lung function. However she did very well and within hours of the tube being placed they were able to start her on slow formula feeds using a pump.

    Looking back on this whole situation I wish we had had the tube placed much earlier - when she first started showing signs of swallowing difficulties, but was still relatively healthy. If we had done it earlier it would have just been a day surgery procedure and wouldn't have been so traumatic for all of us.

    DD has all her fluids and medications via the feeding tube and still eats orally but we can boost her intake. We no longer use formula as it was making her vomit, we have a Thermomix and make her smoothies to have via the tube. She now has a great diet as we can give her blended fresh raw fruit and vege - she can no longer chew raw fruit - apples, pears etc as the food she does take orally needs to be of mashed consistency.

    When she first had the tube put in it was long g-tube, held in place by a rubber disk inside her stomach. It was annoying as she constantly had this 30cm long tube dangling from her stomach. But for some reason her doctor insisted that this stay in place for 6 months before changing to a mic-key button. DD had to be sedated to reomove this original tube, but now with the mic-key it is very simple and easy to change (just held in place by a water filled ballon), it's a bit like changing an ear-ring.

    I was really scared by the whole idea of a feeding tube, fought the decision for a longer time, as I was determined I was going to be able to keep on feeding her orally. But it has been good for DD, she can now eat for pleasure without any stress. If she is unwell and doesn't feel like eating, or tired and not eating enough we can feed her. She recovers much quicker from a cold or chest infection as her body weight is in a healthy range and her overall health is now really good. Looking back at photo's of her over the 2 years before she had the tube placed I can now see how thin she was, she had dark circles under her eyes and just didn't look well. She was always so lethargic and had poor stamina, needing frequent naps during the day.

    It really is a tough decision to make. But it doesn't have to be the end of her eating, and if it means you can keep her healthy then it is a good thing. For us it has meant we no longer have to focus on her diet and nutrition and I can put my energy into other aspects of her care - education, physiotherapy etc.

    Goodluck with it all. Please ask if you have any questions.

  6. #6
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    Thank you so much for replying. You've obviously had a tough road with your little girl. Big hugs.

    My DD has been feeding orally since birth with a few stints of ng feeds. . Around surgery time mostly. I have fought pretty hard and had intense feeding therapy with her.
    I'm not scared of the tube. ..I accept that it could really improve things for her. And she's not failure to thrive and is growing. It's more to take away the pressure of meal times. . To feed her when she's sick and help with fluids as she does not get nearly enough and therefore really struggles with constipation. She goes on some pretty long food strikes and eats very little. She currently drinks pediasure and that is really what sustains her.
    Her paediatrician backed me when I brought it up. .. Her dietician also. Her speech and occupational therapist not so much! I think they think I'm giving up.
    I'm an scared of complications with it plus the anaesthesia to have it done as she has a very serious heart condition.

    I have really appreciated your reply. .. It is so helpful to hear about positive stories with it and how it made a difference.

    I feel that this will really improve our family life but I'm also nervous about it.

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    Oh plus I had been researching a blended diet and the dietician at hospital said they are not allowed to recommend it due to how you prepare it etc. But I'm definitely thinking some blended some formula would be good.

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    I know this is an old thread, how are you going with things? My 8 yr old had a mic-key

  9. #9
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    Oh thanks.
    We are still discussing it with Dr's. Lol.
    She's drinks pediasure so at this stage we are pretty much saying why do it? If she's getting nutrition by the way of pediasure!

  10. #10
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    We are discussing this to at the moment. Another stint with an ng tube and I think the choice will be out of our hands. He is just about to go back on peadiasure again but if he won't take it I have no other options left. He is on a puree only diet already.


 

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