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  • Ellie
    replied
    Sorry Denise, Apela is the Portugese association for ALS, or ELA as it is in Portugese. They have some tie in with Nestle Nutrition, it seems.

    Hopefully the pharmacy will have ideas for you.

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  • denise
    replied
    Matthew it could come by donkey. You are so kind and wonderful.
    I shall be heartbroken when my son and his girlfriend leave. 😭

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  • denise
    replied
    What is apela?
    I see what you mean. Would have thought the doctor would have said once he becomes dependent on the peg for food. I have a lovely local pharmacy who are helpful. I will have a word with them.
    thanks Ellie xxxx

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  • Ellie
    replied
    denise Just a thought - if Stephen was pump fed, would that and the feed be supplied? Unlike the Ensures and Fortisips/Fortimel, pump feed can't be taken orally, so might be classed differently. Might be worth asking his GP or maybe it's a good time to join Apela?

    You need local support for the tube and nutrition.

    Big hug to you, especially needed when your son and GF go, I suspect.
    Love Ellie.

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  • matthew55
    replied
    It's on the way and you should have it in a week. I didn't want to give my arm and leg for anything quicker sorry. x

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  • denise
    replied
    He's my hero 😚

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  • Ellie
    replied
    Nice one mate 😘

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  • matthew55
    replied
    I'm sending 24 high fibre chocolate tomorrow x

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  • Ellie
    replied
    Yes, €12 per day will soon deplete the coffers 😯 probably similar price on Amazon and eBay?

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  • denise
    replied
    Looks like in the region of 12 euros for 4. 😐

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  • Ellie
    replied
    Perfect Denise. Cook is the tube brand/manufacturer and the 24Fr means the actual tube diameter is wider than many other tubes, at 5.5mm. This is good if you plan to blitz up food but it still needs to be very smooth and quite thin.

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  • denise
    replied
    Ellie does placed peg cook 24 fr mean anything to you.
    I'm trying to translate it 🤔

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  • Ellie
    replied
    That's pretty poor form, Denise - left on your own to figure out what to put through Stephen's feeding tube, and in what consistency 😫😫

    If you are going to blitz up regular food, it has to be really smooth and thin, and well flushed through afterwards with water. I'm sorry you've been left to your own devices. I had a quick look at Nutricia's .pt website, which says their products are available to buy in pharmacies, so I suggest you buy a few bottles of Fortimel to have on hand for those 'just in case' situations (mind you, I've no idea how much they cost)

    I don't suppose S got details of what tube was fitted - maybe in his discharge letter (she says hopefully 😏) or sometimes it's stamped on the actual tube itself. I'm looking for an Fr or Ch size, which denotes the width of the tube, that will give an idea of what can go through it.

    Best of luck to you both.

    Love Ellie.

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  • denise
    replied
    Nothing will be prescribed just given a few ideas and told to buy a good blender. Im not impressed. Something for his stomach has been prescribed and we have to pay for that too. Considering hes 70 next year im at a loss we have to pay for prescriptions.
    he's not in any pain, apart from complaining that the aloe Vera gell is cold 😉

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  • GaryM
    replied
    I'm just in the process of deciding which of the nutritional supplements I prefer, before the dietician prescribes them for me. She had some samples sent to me to try. The ones I've been sent are Fortisip, Fortijuice, Altraplen, Altrajuce and Foodlink Complete. She also sent me some Nutricrem, which are like yoghurt. Didn't like these at all and obviously they can't go through a feeding tube. I prefer the milkshake ones to the juice ones. The only thing is, I don't really have a sweet tooth so really I could do with savoury flavours. Cheese and bacon would be nice.

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