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Thread: Long Term Tube Feeding of an older child (toddler)

  1. #19

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    Sorry to here your son is on NG feeds as well, I hate NG tubes miki has only had hers back in for 2 days now and already wont even have a botle near her face and her puking has increased lst time on ng feeds she was on continuos 24 hours a day this time i was wanted to atempt to botle feed at day time and cont. feed at night but already she isnt tolerating bolus feeds so it back to a cont. feed as you would know chasing a crawler with a feeding pump is not easy but at least she wil gain weight



    Are they going to put a G tube into you son if he will be on tube feeds long term or stick to the NG its realy funny in the US and england they g tube after about a month of tube feeds where as in australia they can have ng in for ages,

    what formular is your son on and what over night rate is he on just curious im trying to get kenzee to a decent rate with out making her puke



    DGE is delayed gastric emptying hense why she refluxer all day long and doesnt get hungry

  2. #20

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    wow you have been through alot theresa and your poor litle emma my god

    reflux DGE and food intolerance and on neocate very simalar to miki only you guys have suffered for so much longer you poor thing

    As far as tests go a miki has had a

    Barium swallow not the best test to determine reflux but is great for checking anatomy
    empedence study this is the best test for determing reflux as it is a 24 hour probe and mesures acid and non acid reflux
    endoscopy
    gastric emptying study stress ful test they are strapped down for over an hour but was a very benifical test for us

    basicly all the tests showed servere reflux and she also has apnea and resp issues partly due to her reflux and partly cause of her throat issues but thats another story LOL

    I hope that all of our kids are better soon

    good luck for the endoscopy results

  3. #21

    Join Date
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    to all of you suffering through this with your littlies.

    Mikis mum I can only imagine who awful it must have been to deal with you daughter having a GES done I know I was bad enough having mine done and I am a grownup!! I also have Gastroparesis so I can fully sympathise with what you are dealing with. Theresa, if motilium is working so well for Georgie it suggests to me that her issues may be delayed emptying as much as reflux especially when I remember your post after the Brissy trip saying that they found no oesophgeal damage.

    Motilium is a motility drug, Losec is a PPI or anti reflux drug so d different things. If the Losec didn't help maybe Reflux isn't the big issue. I dunno cos I am no doctor just doesn't gel with me that's all IYKWIM.

    Some suggestions which you probably already know anyways but GP or DGE has certain dietary things that can sometimes help.
    I know they say give lots of fresh fruit and vegies to kids but for GP these types of foods are the hardest to digest and cause the most discomfort, pain and nausea to a sufferer. The best types of foods are ones that are more processed, mushed up, cooked, etc. Avoid fibrous foods and grains, they can accumulate in the gut and form bezoars (think furball!). If you need to up calories use simple sugary foods..fat slows digestion further so anything fatty, creamy etc might not be so good. I know many many adults with GP who actually live on baby food but they are at the severe end of the spectrum.

    If you google gastroparesis you will find a whole heap of info on things you can do to make the digestive process easier to handle. For myself I know that I cook all my vegies don't eat a lot of fruit unless stewed etc, eat little red meat (mince is not too bad) and I can get away with eating things like biscuits etc for the easily digested calories.

    Anyways tell me to butt out if I am being a sticky beak....hehehehe...Ijust feel so much for your little ones cos I know how painful it can be for me at times.

  4. #22

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    im glad the motility meds are really helping with her DGE and reflux thats really good, kenzee isnt o any motility drugs she is having surgery to fix it as hers is to do with anatomy motility meds may help a litle but not enough avoid surgery she also has cardiac issues so again any motiliy meds are a no go unfortunaely

    pepti jr that is the formular that miki is going to try after she has recovered from surgery and things have setled down in her tummy all she has ever tolerated is neocate but even that is a no go the last two days she is now on pedilyte (hydrating solution no formularat all) is pepti jr the one in cans if so i realy hope miki can tolerate that one cans would be great how sad am i im excited about mik having a difernt formular to try LOL I understand what you mean about your DD being a slow drinker when kenzee had her tube out for 2 months she was on 150ml botles and drinking at most 120 mls and it took her over an hour to finsish it between the reflusing crying pretending to drink but still i think 120 mls is great

    hope you have fun camping I dont know how you cope with 2 kids with GI isues it must be a night mare

    Mel you poor thing thats all i can say it must be awful dealing with this as an adult and like therasa said i would so never tell you to but out any advice is acepted gracefuly

  5. #23

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    Just popping in briefly to say I am having one of those weeks where I am SOOOOO so so so so sick of bolus tube feeding and kangaroo pumps. Wish my boy would eat! Aghhhhh he still won't eat a single itty bitty thing or drink anything other than a few sips of water.

  6. #24

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    Theresa, I'm so sorry to hear things aren't going smoothly. Big hugs. You are a darling mummy and hopefully some time soon Em's issues will be resolved. I really hope Em doesn't need to get a peg, it seems so much more "permanent" than an NG tube, IFKWIM... The non eating is sooooo enormously frustrating isn't it! I wish there was some magic way to get Em and Gus to eat. I'm sorry to hear she's not taking to food better. Is she able to articulate what she's thinking re not eating? I think one of my biggest frustrations is not knowing for sure why he won't eat. Is he scared, does it hurt, is he lazy, does the NG tube hurt his throat, etc etc

    Gus is still not eating or drinking at all, other than a few sips of water. I'm so over the night time pump feeding. We had a particularly tough night last night. DH and I feel as though we were up all night. Gus's kangaroo pump seemed to be on overdrive and was alarming at least once every hour. He was crying, vomiting, getting tangled in his cord all through the night. I went through four cot sheet changes overnight - either from the connection point of the tubes leaking or from Gus's vomit. Blahhhh sooooo tired this morning. The worst thing about this non-eating is not knowing when it will resolve. Yucky, I know things could be so much worse, but today feeling so tired I desperately wish Gussyboy would start eating so we could get rid of this horrible nasogastric tube feeding cycle!!!!!

    I've heard about a hospital in Austria that specialises in tube weaning. I'll have to email you the link to it. Gus's OT told me about a former patient of hers from London who took her 18mth old son there. He'd been completely NG fed since birth and is now completely self feeding since being at the clinic. Hopefully we won't need to resort to that, but it's good to have that idea tucked away for the future if all else fails. I don't know of anything similar to the Austrian clinic run within Australia, do you?

  7. #25

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    Wow.. I have been reading all your stories...

    you are all amazing mums & your little ones are so lucky to have you as your parents!!!...

    I have no idea how tought it must be for you all & I hope that all your NGT feeding days are over real soon & the wee monsters develop massive appetites!!!

    *hugz*

  8. #26

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    hey guys i dont know of use have noticed i havent been on here the last week kenzee had her operation last week a Nissen fundoplication which is to stop her servere reflux and was ment to make her not need to be tube fed any more but unfortunately that is no tht e case with kenzee she is stil refluxing gagain and chocking like mad and isback to being totaly tube fed on a continuos feed, she is still in hospital we have just popted home today to get some more supleies and wil be going back in about an hour

    Needles to say I am feeling a bit down at the moment kenzee as you know is one year old and she now has 6 scars on her tummy and is back in newborn nappies

    She is stil on reflux meds and they have just started her on a motility med to tery and get the feeds to digest but we will see im not holding my breath

    the plan is to get her of the tube with in 3 months but im not holding my breath, so we are in hopsital until she gains some weight and stops gagaing and retching all the time they are doing a Upper gi this week to see if the fundoplication in intact and not to loose or too tight if it isnt then she wil need another operation

    so right now we are facing posibley another 3 ops on her tummy a gastrsotomy, a pyloryplasty and another fundo none of this is definate but isnt ruled out

    we have been told one again my daughter is a very servere case and that its not going to be an eaasy one to figure out she has a very complucated GI disorders im so sick of it i wish it was as simpe as some people think it is

    Man tube feeding sucks

    sorry for the vent

    I hope that things improve for you guys soon

  9. #27

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    Kristie I was just wondering if your sons reflux is totally under control with medications? Is the reflux the main thing that has made him FTT? or is he now totally averted to feeding himself?

    Parker had severe reflux, that left him with serious eating aversions and honestly thinking back I don't know how we got through it, but I thought for what it was worth, I would mention that until we agressively fought the reflux we didn't see any progress, and more and more side effects from the reflux were emerging. I found with Parker that medication was key and after that eventually he started feeding again.

    I also know of a mum who is sucessfully weaning her son from the tube and he is now up to 40% calorie intake by mouth, and this is a kid who would put nothing in his mouth, so it is possible.

    It is just so hard when people and doctors don't understand how serious reflux can be and that it doesn't always go away when they magically reach age one, and that the complications and emotional aspects hurt real bad.

    So I thought I would mention it, because it got till Parker was 14 months before FINALLY a doctor gave us the right information, the right meds and got us on track.

    Mikienzeesmum

  10. #28

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    Don't you just wish that kids who have severe reflux with all these problems associated had a different name to call it, the number of times you get, oh just reflux, or haven't they grown out of it yet, it is good to have a place in your own country where people understand KWIM?

    I am also a member of another reflux support group, it is in America though, so some of the things are different, but it is great to have people who just get it. Which group are you with? Are we allowed to say, might not be good board ettiquite LOL but we have quite a few tube feeders if you needed more info on stuff.

    I am sorry to hear both your little ones suffer so severely. Parker is about Emma's age, we weaned off the losec in Jan and he was doing OK for a bit, but we are pretty sure we are going to have to go back to it soon, the last week especially has been horrible.

    Oh well, day at a time...

  11. #29

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    hi guys
    we are home and things are slightly improved still gaging and so on but in comoarison to before she is a lot better still on her continuos feed but at least she is tolerateing that

    theresa im so sory to here things are not improving I know it sucks that em has to go into surgery for her peg and colonoscopy but just think no ng tube getting put in and out and no more sticky tape on her pretty face and the best thing no more nosey people staring at her i hope it goes well big hugs thinking of you


    Hi scarlet

  12. #30

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    Hi girls, No change on our front. Gus is still not eating anything at all or drinking anything other than a few sips of water. I ran into a woman at the park yesterday. She is a nanny to a little girl I know from the park, anyhow that part is not the relevant bit. The nanny was saying she has an adult friend who had to be NG fed for about 6 months due to some medical complication (the nanny didn't remember the details) and when it came time to wean her off the tube and back onto eating, she found she couldn't eat. She had no history of eating disorders/anorexia etc but still found her body couldn't seem to cope - either at the mouth chew and swallow level or at the gastro-intestinal metabolism level. So she had to go to a clinic for anorexias who are returning to eating. Apparently they taught her to eat. It was a slow process and she was apparently quite the chubby one at the clinic, being the only client without an eating disorder/anorexia type issue. So the nanny said to me that she thinks I should bear that in mind when trying to get him to eat. When you think the nanny's friend had a lengthy history of being an eater and still found it hard, I guess it's not surprising that it is so hard getting Gus to eat.

    Hi Theresa, Glad to hear you're at peace with the PEG idea. Well done!
    I'd love the details of the support groups you guys are with. So far we've been going it alone (other than with support from BB and to a lesser degree from Austprem)...

  13. #31

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    guys there is a great Tube feeding suport group on infantrefluxdisease.com as the name sugests its a reflux web site as well but has loads of tube feeding mums on there its realy helped me

    scarlet rachel is also a member on there, all the girls are really nice and helpfull yo should check it out im sure you will like it

  14. #32

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    neocate kids im going to check that our now thanks for that

  15. #33

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    Thanks Theresa, RISA is where I first found info on reflux in Australia. It is a great help to so many.

    Like Amy said I am a member of infantrefluxdisease.com and have been for a while, it is a good place for all problems associating reflux. The support and friendships I have made there are second to none, it is great to have people who just get it. They know what it is like, and you don't have to explain anything.

    Kristy and Theresa, if you ever get a chance please post, we are always in need of people who have so much expierience and it is always good to get someone elses perspective on things like the feeding programs etc...

  16. #34

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    I am glad you joined, you were on yesterday I saw you! I just looked up your profile and it says users awaiting email confirmation, have you got the email that you have to click on to complete the registration?

    Otherwise try again and see how you go. I just wanted to add that they are in the process of getting a new server, and the site is a lot slower than usual (annoyingly so LOL)

    Good luck with the surgery, I know it is hard, but try and keep it out of your mind, it will be a good thing getting rid of the NG, and hopefully things will improve dramatically with it.

    Amy had an appointement with the surgeon today, so she will see if they will do any more surgeries for miki, I am hoping for a G or J tube, fingers crossed!

  17. #35

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    hi guys

    theresa
    good luck with the surgery for the peg as for any tips on how to prepare for surgery i really dont know i usualy find about 2 days before any of miis ops i have been really emotional and nervous and all over the place and i tend to get it all out then so i can hold it together on the day, have you got someone going to sit with youwhile she is in theatre that helps also have you got any close friends that you can text message whilt she is in that helps the time pass especialy if it is a suportive friend LOL i teend to text scarlet when mikenzee is hospital these days
    I m glad you joined IRD look forward to seeing you on there

    And yes like scarlt said we saw the surgean yesturday and Miki is geoing in at teh start of june for a GJ peg im nervous about it but confident it is the rite choise for mikenzee she will also have her hernia fied on the same day

  18. #36

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    me and scarlet live in perth

    Hey teraesa i just seen you on RISA i think its you any way,
    thats nice that you are taking her to the zoo first im sure she wil love it

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