10-22-2011, 05:43 AM   #1
Bubbly
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Refusing to drink Modulen

Morning everybody, well what a rollercoaster of a week!

Started Modulen on Monday, son is 12, 5 x 500 ml a day, in slow increases to get to the full amount, started bad as expected, then told to try Nesquick which was a succcess to start with, however yesterday quantitys went down, refused his evening one full stop, lots of tears, he hates it, doesnt want it anymore, hates life!

This morning for breakfast did it with banana nesquick, which we called he magic monkey banana juice! well it worked at the time!! only drank half, and thats only a 400ml!!

He was encouraged by the hospital to keep a note book to write down his feelings, draw pictures etc, and to keep it in the same place so we could read it, well read it today and he said 'feel like suicide, want to be dead, hate this'!! feeling very down after reading this, and feel for him.

We are about to make his 2nd shake of the day, but not holding out alot of hope of him drinking it!!

Go back to hospital thursday, however will be speaking to them monday regarding whats going on, in the week they said he needs to be upping the amounts he needs to be on 500, but i can get him anywhere near that amount!!

Any help, advice, thoughts on the above would be most appreciated.

Many thanks
10-22-2011, 06:06 AM   #2
beth
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I can really feel for the guy! My 3 weeks on Elemental was hell - it made me feel worse, although it did do the trick. How to get a 12yr old to understand and drink the horrible stuff.... I've no idea!

Anyway, I wanted to say Hi! from Cambridge too.
10-22-2011, 06:52 AM   #3
handle
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Does he not like the flavor or is he simply hating having to drink any kind of liquid muck, and being sick of course?
I couldn't get much of that Modulen drink down, and I'm and old fella! Eventually I went onto Ensure plus vanilla which was great for a fair while, and then finally onto Fortisip banana...which I like.
I don't think you can force that stuff in if he doesn't like it....unless you can bribe him or give him sweets as well...
good luck.
10-22-2011, 07:09 AM   #4
__JK__
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Hi Bubbly,

Sorry to hear he's having a tough time with the modulen. I can sympathise. I'm in my 5th week of it now. It is really tough! As if going without any food or drink isn't hard enough you have to drink Ssooooooo much of this horrible stuff. I'm having to force 3000kcal in. It really is just too much. like wise for a young lad 5x500ml is a lot to drink in a day.

I had an elemental diet when I was his age but that was before the days of modulen. It was a thick greeny yellow frogspawn like stuff that you couldn't drink a teaspoon of, let alone gallons. I had it via NG tube which made it easy to get in and got the full dose but having to go to school with that was a pretty terrible experience. Is he at school at the mo or too poorly? If he's laid up at home the NG isn't such a bad option and they will do it with modulen.

I really do know how hard it is but it's important to crack on with as the benefits of it are huge. I've had it several times in the past instead of preds. Modulen is by far the less evil of the two.

I'm sure the dietitians have told you the various ways to jazz it up. for what it's worth, I find the best way is ice cold with sugar free strawberry or banana crusha. (banana crusha is very hard to find. I found it the local booker cash and carry) I use the shaker they gave me. set my watch to alarm every 1h:30m shake it up and just down it as fast as I can. That way I have 1h:25m where I don't have to think about the god awful stuff. Until my watch beeps, then repeat.

I think the best way to cope is find the best way you like it and stick to strict regieme! it's not forever so just think of all the nice things you can have when your done.

A couple of things they told me to try.

Warmed up with a bit of coffee
Ice cold with crusha

JK
10-22-2011, 08:29 AM   #5
Bubbly
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Thankyou all for replying.

So far nothing consumed!!

We have tried it with banana nesquick, vanilla crusha, strawberry nesquick! Banana was his fav and was doing ok with it until last night!! I have just made a banana one and put it in the freezer, maybe that will help.

He didnt go to school last week at all, and he has just started half term for two weeks, which is a good thing. Rang the hospital today, but obviously being the weekend could only leave a message. Hubby very concerned and want to take him to hospital, as in his eyes it is starvation!!

As he isnt a coffee drinker, will give that one a miss, tried ice cold, extra ice and crusha done in smoothie maker, nope, no joy!!

He has currently told us he wants to jump off a cliff!!

We will keep going, i am not going to give him food at all, tough love it is and wait for the hospital to ring on monday morning.

Thanks again and will update with any progress
10-22-2011, 08:46 AM   #6
Tesscorm
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Hi Bubbly

I feel so bad for you and your son! Its so hard to make a young boy understand the necessity of doing something he so much dislikes. My son is 17, much more mature than your son, and I still feel the frustration that he just won't eat the healthy foods he should because he truly just doesn't like them!

But, as far as the modulen, my son was also on the enteral diet. We were not given the shakes, he was given the formula to ingest through NG tube. I hear again and again on this site that people find this difficult but, honestly, my son had no problem with the tube. He started off with 6 weeks of formula only (in May) and is still on the maintenance therapy (1/2 dose with regular diet) with the tube. He inserts the tube before bed (literally takes him 10 seconds), hooks up the formula overnight and removes the tube in the morning (even easier than inserting it). While he was on the formula only, he was sometimes hungry in evening, so, once or twice, he actually inserted the tube after school, took in 1-2 hours of formula, went back out and reinserted the tube before bed to finish the formula.

I realize he is older than your son which certainly makes him more aware of the necessity, however, for him, it is a very simple treatment. He is going for an MRE in a couple of weeks and we have already arranged that he will ingest the 'prep' drink through the tube because he doesn't want to have to drink it. This was his preference.

I need to run out just now but, if I can help at all, please feel free to ask me any questions you or your son may have re the NG tube.

Good luck
10-22-2011, 08:49 AM   #7
__JK__
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Hang in there Bubbly,

I think the first week is the toughest! You just need to get over the taste and get into a habbit.

He will be feeling terrible right now not only because he know's how horrible it is but also if he's getting barely any calories in he's gonna feel lousy just because of that. I remember when they told me I needed it the second time. I was 14 and I litteraly cried my eyes out.

Oh yeah, I forgot about freezing it. I've not tried that yet. I'd have to eat an ice lolly the size of my own head! With the weather getting colder, I think I'll skip that one.

500ml really is a lot to take in one go. I'm doing 220ml water with 8 scoops 9 times a day. It may be worth cutting the quantity down and just having more doses. Half a litre in one hit would make me want to cry now!

Don't make the mistake I did. I was cutting down the vol. of water with the same amount of modulen just so didn't have to drink as much. As I've found out you can't do that. It doesn't disolve properly and your body doesn't absorb it so you lose weight and it makes your big D worse! so don't be tempted.

JK
10-22-2011, 09:11 AM   #8
Bubbly
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Thankyou both for more helpful advice. The tube sounds like a good idea, not been mentioned yet at hospital due to when spoke on Friday morning, he was doing ok with it. Will mention it when speak to them on monday. Have to admit dont like the sound of putting it on own, dont know enough about it to be honest, have to admit thought they put it is and it stayed in place for the duration! Think i need to read up on it.


JK - the quantity is an issue, he has never been a big drinker/eater so this isnt helping consuming the vast amount he is ment to. He is ment to be every 2 hours, however as he is sleeping until 9am, which he never used to, timings go out the window! Only had two so far, not finished, maybe 100ml at the most out of each one, really needs his lunchtime one, so will try banana again. Waiting for the frozen one to freeze, yeh not the best thing maybe when its chilly outside, but if it works i will be more than happy.

Think need to look at quantities and divide up more are you suggested, just need to work out the measurements, which seems tricky in its self! maybe thats me once again!!

Thanks again, will go and measure and check and trying some gentle encouragement, and a challenge on the Wii!!
10-22-2011, 09:53 AM   #9
__JK__
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Did they give you the little booklet with the quantities and serving sizes in? that should help work it out but I know what you mean, it is complicated.

The tube is good. Takes some getting used to and at that age especially you don't want to be seen dead with it. When I had it as a younster they put it in and left it in for 6 weeks. I had to go to school with a special back pack pump that slowly pumped it in over the day. There were a few occasions when i'd been feeling really unwell and had been sick. The tube comes flying out of your mouth like a big piece of spaghetti which is a bit scary but you just pull it out yourself and go down the doc's for a new one.

Putting it in is a little torturous but fingers crossed, they'd only have to do it once.

Haha YESSSSSSS! Wii challenge would even work on me now and I'm 29.
10-22-2011, 01:11 PM   #10
Bubbly
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Bad news, not had anything for 24 hours, poor boy is starving!

Why do these things all happen at the weekend!!!!!

We are going to try and stick it out until monday morning, he just cant stomach it, feels sick, hurts his throat, cant swallow!!

Think he needs to be fitted with nose tube, at this rate there wont be anything of him!
10-22-2011, 03:01 PM   #11
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Bubbly,
So sorry about what you and your son are going through. it stinks. My daughter hates "swallowing anything gross" and I can only imagine what it must be like for you. I agree--seems like stuff like this always comes up on the weekend. It is such a hard age for them, then for them to have to deal with this too, it really stinks. My thoughts and prayers are with you!
10-22-2011, 06:50 PM   #12
izzi'smom
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Awww...poor kiddo! We CAN go for days without food, and while he is likely hungry, as long as he is drinking water, he should be OK. I would be on the lookout for signs of dehydration, though, and take him to the hospital if you suspect it. (Our doctors office and insurance company both have nurse lines you can call after hours to get info like this...not sure if that is an option where you are )
DD (4) refused all of the drinks...guess they are pretty bad...but we go Monday to get an ng tube.
Hoping for some good news soon!!
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10-22-2011, 07:28 PM   #13
handle
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I really think it might be an idea to give him some bland, low res food until he gets his nutrition sorted out. It won't make any difference in the long run, and will save him from being unnecessary suffering. Nutrition is so important in healing - starving is detrimental. Been there!
10-22-2011, 08:00 PM   #14
Misty-Eyed
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Hi bubbly. Are you sure he's not mentally not wanting to drink it and so won't? Hope that makes sense. I was 12 when they first put me on an elemental diet. They'd already said if I couldn't drink them then I'd have to get a nasogastric tube. So when I tried one drink and didn't like it, I was determined not to drink anymore till I got the tube. They were too hard for me to drink!

Needless to say I got my tube up my nose and it was a lot easier for me to deal with. It got pumped in over night and I could take the tube out during the day.

Hope things get easier for you all!! Hang in there!!
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10-23-2011, 10:47 AM   #15
Sascot
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Hi, I did reply to your other post earlier. Meant to say that my son has a "long term" tube that can stay in for up to 3 months. He didn't enjoy having the tube put in but once it was in that has been him. He just wears it all the time, so no worries about putting it in and out.
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