08-14-2011, 03:31 AM   #1
zipster1
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modulen

my son has recently been diagnosed with R.H.S Crohn's. After months of sickness etc and going down the " it's viral,it's gastro, take these anti-biotics, lets take some bloods" we finally got sent to see a specialist who told us he was 95% positive we were dealing with I.B.D/Crohns. Things moved fairly quickly from that point. Next day was a white blood cell test, 3 days after that we were @ Yorkhill sick childrens hosp in glasgow to see a Gastro specialist, 3 days l8r and he was admitted for a endoscopic and colonoscopic exams which confirmed 100% he had crohns. He was put on a modulen diet for 8 wks but half way thru 1st day he started gagging and throwing up when trying to drink the modulen. Even after adding Crusha syrup to it he was unable to take and became very stressed and upset. To cut a long,long story short we are loking for any help,tips,alternatives any of you people can provide us. As it's the weekend the people @ hospital are not available for help.
08-14-2011, 04:40 AM   #2
DustyKat
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Hi zipster and

I am so sorry to hear about your son.

I know many people have problems with elemental diets and unfortunately I can't be of much help to you. My son was only on a liquid diet for a few days and he prescribed Ensure and Osmolite that he flavoured with Quik. Please have a look through the Diet Forum as there are quite a few threads on the subject, like this one...http://www.crohnsforum.com/showthrea...ight=elemental

Good luck and I hope you find the answers you need.

Dusty.
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08-14-2011, 05:35 AM   #3
zipster1
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thx much.
tried him again today with modulen with added crusha vanilla ice-cream flavour and he got it down with no "blowback" so maybe a bit of light at the end of the tunnel. If he is unable to do this himself the next stage may be a gastric nasal tube but as he is about to return to school after summer break he is a bit reticent about this understandably.
08-14-2011, 05:47 AM   #4
DustyKat
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I hope you can find something to make it more palatable and he can avoid the NG tube. There are many other types of drinks available so there may also be another that he is able the tolerate easier?

Dusty. xxx
08-14-2011, 07:04 AM   #5
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Sorry I'm no help Zipster, but I'd say Dusty has led you to the right place for advice. I just wanted to welcome you to the forum! Good luck!
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08-14-2011, 07:48 AM   #6
Tesscorm
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HI Zipster, I don't know how old your son is, but my son (17 years old) was also on a liquid diet for six weeks when he was diagnosed in May, however, he did have the formula through an NG tube.

As much as I wish he did not have to deal with this at all, he did have a fairly easy time learning how to do it. Within 2-3 days, he was having no difficulties inserting the tube and, as the feed was run overnight, it was not too difficult to adjust his schedule to the feed. Once the six weeks ended, he began eating all food and has continued with the NG feeding on a maintenance program (1/2 dose, 5 nights per week). And, as a picky eater, he, himself, admitted that he preferred the 'tube' rather than have to drink shakes that he wouldn't like. It's not perfect... he has, on occasion, asked about the shakes (Modulen is not avail in Canada yet) as it does interfere when he would like to sleep at a friend's place (but he can 'choose' his two nights 'off') and he's worried about residence at university next year (we'll worry about that then!) but it hasn't been as difficult as we first thought!

Good luck to your son! I hope the treatment works well for him!
08-14-2011, 12:23 PM   #7
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Hi zipster

I have absolutely no experience with the modulen diet, but I wanted to wish you and your son the best of luck and say welcome to the forum!

hugs,
~t~
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08-14-2011, 02:14 PM   #8
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Hi

I was on Modulen for a very short period but I really couldn't tolerate it so they had me on a 6 week liquid only Ensure diet which didn't have the anti-inflammatory properties of Modulen but gave my bowel a rest so that is an other option.

But I did go through trying to drink Modulen and having it down an NG tube before this option. The NG tube, although not ideal, did make getting the full amount down a lot easier.

Hope your son starts to feel better soon x
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08-15-2011, 12:38 AM   #9
zipster1
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Thx for all your kind thoughts/wishes.
Will be talking to the IBD specialist and the dietician l8r to.day. will be putn fwd the alternatives to them.
Tesscorm just reminded me that i had left out my son's age in my post. He's 13 yrs old.
08-15-2011, 01:11 AM   #10
MumofOli
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Hi

My son was on Modulen for a short while and hated it, it was always such a battle to get him to drink it, but we found that he preferred the strawberry and the vanilla ice-cream flavours of crusha but he also seemed to like it frozen into lollies. It seemed such a large amount that he had to drink in a day!

Hang in there, I know how hard it is to see a child go through this, but you have definitely come to the right place for advice and support.

Treena x
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08-15-2011, 02:36 PM   #11
vness1208
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welcome zipster, srry to hear about your son. the beginning of the diagnosis is usually the hardest part for us parents to get through, not knowing much about the disease and usually feeling lost. its hard to see our children in pain and not being able to make things better for them but, we all understand what you are going through. I hope your son gets the treatment he needs to recover. good luck and best wishes. hang in there
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08-17-2011, 03:00 PM   #12
zipster1
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my son seems to be gettin a handle on this thing now.(touch wood )
Hoping it was just the newness/strangeness of only being able to have modulen that freaked him out.
Will keep you all in the loop re: future developments.
thx for the shoulder to cry on

Last edited by zipster1; 08-17-2011 at 03:08 PM. Reason: bad spelling! :-P
08-18-2011, 10:02 AM   #13
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Hi just wanted to say I understand what you are going through. My 12 year old son was diagnosed a couple of weeks ago and is on modulen. I am sure you have tried these but he found if he put his hand over the top so he couldn't smell it and drank through a straw it really helps him get it down. He also preferred mixing with nesquick banana flavour rather than crusha. Despite strawberry flavour being hs favourite usually he stated that modulen with strawberry crusha was rank!
08-18-2011, 10:27 AM   #14
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What is modulen? Is it just a dietary replacement?

I don't think they do this in the US anymore, or if they do, it's not common anymore. I was on a nutrient formula diet on more than one occasion as a child, but my daughter has never been prescribed one despite her illness being more severe than mine.
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08-19-2011, 05:32 AM   #15
DustyKat
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Modulen is a form of elementary diet.

Research seems to indicate that it can be just as effective as Prednisone in inducing remission, particularly in children.

Dusty.
08-19-2011, 06:56 AM   #16
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Glad he's getting on better with it, zipster!

If he does have an NG tube, it's not the end of the world. I got put on a liquid diet for the first time when I was 12, back in the days before modulen was invented! I couldn't stand the thought of the drinks and so decided that I wanted the NG tube. I had the feed pumped into me over night (bit strange to wake up full!) and then I could choose to take the tube out for the day and put it back in myself in the evening, or keep it in. It was very easy for me to do after I got used to it, although I often chose to keep it in.

Hope your son improves on the modulen
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08-21-2011, 01:31 AM   #17
zipster1
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Thx guys. wee update. 4days without sickness. 1st time since january!
keep seeing references to nesquik so plan on askn ibd spec if this can be used as an alternative to crusha.
08-21-2011, 03:11 AM   #18
DustyKat
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Woohoo, what a wonderful update!

I don't know about Modulen but quik was no issue with Matt's Osmolite. Good luck hun!

So happy for you...

Dusty. xxx
08-22-2011, 03:16 PM   #19
zipster1
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ONE WHOLE WK without sickness, still getn pains but coping! :-)
Big thx to toneloc for pm. Really gave me a boost.
Barium meal tomoz so fingrs crossd!;-)
08-28-2011, 03:55 AM   #20
Sascot
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Hi Zipster
I just wanted to post a reply to say I sympathise. My son is 12 yrs old and just been diagnosed with Crohn's on Thursday last week. He was given Modulen and cannot stand it - it made him feel like he was going to be sick!! Couldn't try and force him any more. We are also being treated in Yorkhill as we only live 45 mins away. Hoping to speak to the nurse tomorrow (annoying how everything shuts down at the weekend). We have the barium meal on Thursday

Last edited by Sascot; 08-28-2011 at 03:56 AM. Reason: left out something
08-28-2011, 06:14 AM   #21
Dexky
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Welcome Sascot! Won't you create an intro thread for you and your son. More will see it and you can be properly welcomed!

We've all felt the frustration of things moving too slowly when it comes to the care of our kids!! Has your son been commenced on prednisone?? any other meds?
08-29-2011, 11:15 PM   #22
zipster1
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thx for your support Sascot. As you may have noticed already there are lots and lots of people just like us populating this site so help/support is only a click away!

update

My son proven to me, ONCE AGAIN, that he has my stubborn streak and his mothers good sensible head by sticking to the modulen diet. HE even made me take him to a local restaraunt/pub we ate @ regularly bcoz it sold 7up!
16 days into diet. No sickness and for the last 7/8 days no stomach pains either so looks like modulen doing what it says on the tin folks! We see the dietician/IBD nurse nxt thurs so will get back to u l8r.
08-30-2011, 04:42 AM   #23
Dexky
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That's great Zip! Has he found a preference for mixing the modulen with something?
08-30-2011, 05:55 AM   #24
DustyKat
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Oh wow, this is such a fab update! I am so happy that the Modulen is working and what an amazing young man he is, I just bet you are bursting with pride!

May it keep on keeping on hun,
Dusty. xxxxxxxx
08-30-2011, 02:04 PM   #25
zipster1
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Seems to like Crusha limited edition vanilla icecream mix Dexky.
08-31-2011, 05:16 AM   #26
Dexky
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Well I hope it's not too limited then
08-31-2011, 07:39 PM   #27
zipster1
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My wife had all our friends and family buying any bottles they came across! As of lastnight we have enough to get the wee-fella thru his 8 wks!!
09-08-2011, 11:51 PM   #28
zipster1
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update

IBD nurse/dietician very happy with my son's progress!
he has put on 14 lb in the 4 wks he has been on modulen, still no stomache pains or sickness!! If weight continues to gain we've to phone and they may reduce the amount he has to take. Given the ok re:couple of days away!
09-09-2011, 02:15 AM   #29
DustyKat
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Woohoo! Absolutely fabulous update Mum...

May it keep on keeping on...



Dusty. xxx
09-09-2011, 04:52 AM   #30
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Wow Zip! It's working so well they're gonna have to put him on a diet!! That's great!
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