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zipster1

Joined
Aug 14, 2011
Messages
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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.:frown: 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.
 
Hi zipster and :welcome:

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/showthread.php?t=13310&highlight=elemental

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

Dusty. :heart:
 
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.
 
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
 
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!
 
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!
 
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~
 
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
 
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.
 
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
 
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 :)
 
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
 
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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!
 
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.
 
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. :)
 
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 :)
 
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.
 
Woohoo, what a wonderful update! :panda::panda::panda:

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

So happy for you...:mademyday:

Dusty. xxx
 
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!;-)
 
Close to home

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
 
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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?
 
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.
 
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, :heart:
Dusty. xxxxxxxx
 
:ybiggrin: 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!! :ybiggrin:
 
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! :)
 
Woohoo! Absolutely fabulous update Mum...:banana::banana::banana:

May it keep on keeping on...:goodluck:

:mademyday:

Dusty. xxx
 
Wow Zip! It's working so well they're gonna have to put him on a diet:)!! That's great!
 
Question?
Any of you guys heard of a drug called AZITHROMYCIN being used as a protocol for crohns?
reason i ask is yorkhill hosp phoned today saying the docs were cinsidering this for Andy ( my son)
As usual any pointers most gratefully appreciated. ;-)
 
Do you mean Azathriopine?

It's used quite regularly with very good results but unfortunately my son couldn't tolerate it.

There is some excellent information on this forum about this drug?

Bet wishes

Treena x
 
Both of my children are on Azathioprine (Imuran). You will also see 6mp in a lot of peoples signatures and this is a very similar drug.

They are called immunosuppressants and like most of the drugs used to treat IBD they list some pretty hairy side effects but scariest ones are also the rarest.

I guess what the doctors are doing is trying to get him into remission via the elemental diet and then maintain remission with medication. If he does go that path they should do what is called a TPMT test and that will determine if he has the enzyme in his liver that is needed to break the Azathioprine down. If he does then his chances of having serious side effects are significantly reduced. Of he doesn't have the enzyme or have it in sufficient quantities they may not use the drug.

If and when it is prescribed he will have regular blood tests to particularly monitor his white cell count and liver function. Any abnormalities in these will flag to the docs that there may be a problem. The blood tests are normally done weekly to start with but over time should pan out to 3 monthly.

Sarah has been on Azathioprine for 5 years now, she is in remission and has had no problems with the drug. Matt has been on it since last December and he is now in remission, following surgery, and has also had no problems with it.

Dusty. xxx
 
There is Azithromycin too. I googled it. It's an anti-biotic sometimes used to treat H. Pylori so I suppose it is possible.
 
Thx guys. aftr listn to the answer machine again have worked out that it is Azathioprine so you guys called it right!:p;-)
 
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That's great that he is feeling so much better! Always nice to hear that things are going well.
 
I had to go on a 8 week diet of Modulen when I was 14 and I found it easier to drink when it was really cold.My dad tried making ice lollies for me but it was a bit weird...
 
Put that option to my son too and his reaction was the same!:)
Sent an e-mail to the IBD nurse/dietician to see if poss to use bottled water rather than having to use boiled water cooled. Will make going away easier as can make the doses up as we need them.
 
Hi zipster1, my son whos 8 was diagnosed last year with crohns and was put straight on 6mp( after tests to see if he was a good candidate for it) and salofalk, i think azathioprine is the same family as 6mp, immunosuppresants. I was absolutely devastated when he was put on it as the side effects i read just made me cry for days so i called his ibd nurse n she reassured me that the benefits outweigh the risks and she was spot on. touch wood,so far Kian is responding well and his bloods are all good, he is now down to monthly bloods which is good. I see you attend yorkhill with your wee boy, thats where we go also, they have a fab team in there eh. Hope yr son is doing well, take care. xx
 
Dodie74 thx for your advice and kind words. I think the team @ yorkhill are top quality @ what they do and seem to understand the "BIG WEANS" like me too!!:p:):)
 
zipster1 said:
Put that option to my son too and his reaction was the same!:)
Sent an e-mail to the IBD nurse/dietician to see if poss to use bottled water rather than having to use boiled water cooled. Will make going away easier as can make the doses up as we need them.
Click to expand...

I think you cant use normal bottled water.My dietician gave us boxes of litre bottles of hospital water that can be used.Oh yeh also when I went to school I took my modulen in a flask to try and keep it cool.
 
Lol youre so right Zipster1, i think us parents get ouselves into a worse state than the kids as they just take it in their stride!! how often do you attend yorkhill with your wee man? we are 6monthly at the min so back up december again. keep us posted how the wee fella gettin on, take care. xx
 
We are bak then start of october which will be end of the 8wk modulen. Then maybe it will be less frquent.Touch wood. thx again for your good thots!;-)
 
Word back from hosp re: bottled water. you can use it but it doesn't mix as well as cooled boiled water with the modulen!o_Oi
Trip away may be off anyway as weefella havn doubts about enjoying himself but not being able to eat!:-:)-(
 
I AM SO PROUD OF MY SON!
My son was out with friends lastnight and due to the modulen diet he had to take one dose with him!:-( I have just literally finished having a conversation with about his nite and turns out they all went to McD's and whilst his friends were all munching on stuff he sat and drank his modulen! :-( I have just realised that he's going to be fine whatever comes his way! ;-):):) Must get the steel from his mum bcoz i would've folded ny now!!:p:):)
 
Woohoo!!! Kudos to your boy!!! :thumleft: :thumleft: :thumleft: :thumleft: :thumleft: :thumleft:

Dusty. xxx
 
Don't they surprise you??? Amazing how strong they are! :medal1:

There have been a number of occasions since my son's diagnosis that I've swelled with pride at his actions. After all the worry, concern and heartbreak that comes with the diagnosis, these moments mean so very much!:thumleft:
 
I guess most folks on here would go for a DEXA scan due to them having been on Prednisone but since your son hasn't been on any steroids it wouldn't be to test his bone density for this reason.

In paediatrics it can be used for other reasons and I can think of two that may be using it for. They may want to gauge his bone density to see if he has suffered any loss from the malabsorption that frequently accompanies CD or they may want to see what effect the elemental nutrition has had on maintaining the skeletal system and his body fat composition. Just my guesses though!

Let us know what you find out.

Dusty. xxx
 
Thx dusty.;-)
Googled it and all i saw was osteoperosis and then i thot why not ask guys who are in my sons position or have been!
we go to yorkhill on 3rd october so will update afyer.
 
Hi Zipster, after my son was on the enteral formula for a month, he was sent for wrist and spine x-rays (but, not DEXA). The doctor explained that it would be compared typical growth charts of other boys his age to determine if his growth had been affected by the Crohns. (Spine x-ray was partly due to recurring back pains but the wrist was specifically for comparison reasons.)
 
Update.had dexa scan ystdy and then had appntmnt
@ clinic. startn to phase out the modulen from nxt saturday but will be while b4 modulen completely finished tho. re-introduction of foods will commence @ same time. Hosp very pleased with how my son has progressed and we go back in 3 mnth when it will be decided if they will start him on Aza depending on how his bloods wrk out. :):):)
 
Thanks for the update zipster! :)

So happy to hear that things are progressing well, YAY!

:mademyday:
Dusty. xxx
 
hi zipster1, my son also had the dexa scan at yorkhill not long after he was diagnosed, pleased to say his results were normal. He has never been on steroids but i presume its a routine test they do to check bone growth for their age. hopr yr appointment at yorkhill went well, we are back on 5th of december for ours. xx
 
Thx dodie74!;-)
here's hoping everythn goes this well gor both our kids from here on in!;-)

scrap that last line. change it to for All Our Kids from here on!:)
 
One wk on from modulen faze out/ reintroduction of food. So far so good!;-)
He had mc d ystdy and in his words " MAGIC". Down to 2x200ml each day for as long as he feels he is able to do it.
 
Hey!
I'm late to the game I'm afraid!!
I just want to say congratulations;
And I hope everything stays as planned!
:award2:
Well Done!
:hug::smile:
 
Thanks for the update!!! :panda::panda::panda:

It's so fab to hear that things are going so well! Long may it continue!. :):):)

Dusty. xxx
 
When my son was put on modulen my wife and my sister-in-law started a fund in a tin. Tonight we all went to my sons favourite restaraunt and had a slap-up meal. The look on my sons face through-out the meal was worth it. He was laghing and joking with me and my bro-in-law, it was good to see.:);-)
 
Modulen no-more!:)
My son kept up with minimum dose of modulen for full month after he had to and i am so proud of him for doing so with no coaxing from me or his mum!;-):)
So far so good with regard to flare-ups! ( Prob just jinxed it by posting it!:-:)-P but thought would update the thread)
 
Woohoo! Good on him! :medal1:

I hope the good times last and last and last!...:goodluck:

Thinking of you, :)
Dusty. xxx
 
Great news! Sending wishes that he continues to feel well for a long, long time!!! :thumleft::thumleft:
 
Sorry not been on for while!
Run up to festive season was hectic both @ wrk and at home!:)
Andy doing great. Nothing nrw since last post but thats a positive isn't it?

Hope all is good with the rest of you.


MERRY XMAS AND HAVE A GREAT NEWYEAR.
 
Nothing nrw since last post but thats a positive isn't it?
Click to expand...

It surely is! :panda::panda::panda:

Thanks so much for the update hun and may the good times just keep rolling on! :)

Dusty. xxx
 
first follow-uo apmnt just been done today. Doc were very pleased with wee-fellas progress and have gave us next apmnt for 6 mnts from now!:) Also gave us cautionary warning that his system just gettn back to normal so attentiion still needed. like we didn't know that eh!!:p;-):)
We were asked as a family if we would participate in a clinical research program to try and help in the understanding/treatment of crohns etc. No brainer there! Bloods taken from all 3 of us for testing.
 
Thanks for the update zipster! :thumleft:

It's so fab to hear that things have been going well, YAY! May it keep on keeping on!...:goodluck:

Keep us posted!

:mademyday:
Dusty. xxx
 
Hello zipster,

It was great to hear your good news. I think it helps us all to see positive news - thank you. And I hope all continues well.

best wishes,
LilyRose
 
Hosp called ystdy and told us that wee-fellas inflamation markers were still too high from results of last bloods taken. Recomend him going on Azarthioprine. Will leave us for couple days to think it over. Is this a good thing or bad thing? Apparently the Ibd nurse told my wife a flare-up looked likely soon so this is a preventative step right?
Thankin you in advance
;-):)
 
Aza is a very common maintenance med that seems to be the first stop for many. There are several formulations of it. Mercaptopurine(6mp) and Imuran are two that you'll see commonly used on here. My son was on 6mp for about 1.5 years w/o any negative side effects. It failed to maintain remission for him but I was sorry to see it go. He had no issues with it and it's just a pill once a day. I hope it works for your little guy!
 
My son may be in a similar position. EN treatment (6 weeks formula only, June - July) was used to induce remission in him and has been used as a maintenance treatment (1/2 dose of formula plus all foods, no meds) since then. However, his two previous blood tests have shown gradually increasing inflammation markers. At his apptmt last week, tests were rerun and his GI is suggesting that he may have to repeat the 6 week exclusive period and then begin methotrexate. Haven't heard back from hospital yet, so not really sure where we stand.

Not sure what the benefits or side effects are of azathioprine vs. methotrexate??? Or why one would be suggested opposed to the other??

There is a subforum under Treatment for azathioprine: tp://www.crohnsforum.com/forumdisplay.php?f=64

Good luck, let us know how it goes for your son. :)
 
Don't think he could do another round of modulen and aftr the last time i don't think i could either!:p:)
Thx again guys for all the help. This site has been a true godsend to me and mine!;-)
 
It certainly sounds like they are trying to nip in the bud before he does flare. Azathioprine is used as a maintenance medication and I would think they have suggested it to you now as it does take at least three months to become fully therapeutic. If you do go down this path ensure they do a TPMT test first, that will indicate if your boy has the enzyme necessary to break down the drug by the liver. Also ensure they do regular blood tests, starting out weekly for a month or two, then forthnightly for a couple months, then monthly, eventually they pan out to 3 monthly but don't leave it any longer than that.

Both of my children are on Azathioprine as a maintenance med following surgery. Neither have had side effects and both are in remission. :)

Does your son have Crohn's in his ileum (small bowel)? If so has he had bloods done for B12, Iron Stores, Folate and Vitamin D?

Dusty. xxx
 
Small bowel dusty.
Picked up his tabs today. 75mg for 7 days then one 50mg tab 3 times daily.
Trying to get his head round it right now.:-(
 
Okay, I would have the blood tests for B12, Iron Stores, Folate and Vitamin done when he next has bloods drawn.

Hmmm, that seems a odd regime. How much does your son weigh?

I understand mate...:hug:

Dusty. xxx
 
Well that would fit with the 150mg then. Imuran is normally calculated at 2-2.5mg per kilo.

They would normally start you at 50mg and see if you tolerate it okay but I guess half dose wouldn't make that much difference. Then you take the full amount as a single. My children have had no issue with it but quite a few people here take it before bed as it causes them some nausea, that way they sleep through it.

Dusty. xxx
 
Thx for clearing that up dusty. For sec there i was worried. I have a work-mate who's son has had crohns for good few years but his wife is the one who deals with all the hosp and stuff. When i mentioned aza the first thing he did was call her on his mobile then hand it to me!:)
I now have my very own live helpline according to peter's wife. She said anytime i feel need to talk/ask questions etc feel free. Good thing for me is i also hav u guys for my latenite queries!!:p;-)
As i have said in numerous posts b4 this THANK YOU ALL for your support, help and shoulders to lean on in these last 5 mths! ;-)
 
Vey bad form on my part! Sorry about that. :redface:

That is great that you have that support! :)

I hope all goes well for your boy. Keep us posted on how he goes with the Aza. Good luck!

Dusty. xxx
 
Been corrected by my wife.
It's not 50mg 3 times a day it's 3x50mg all at once so you were right about that dusty. ;-):p
 
Bloods coming back looking ok. 150mg aza for the forseeable so fingers crossed!:p
I know i keep saying it but you guys have been the voice of reason in an otherwise CRAZY world! ;-);-)
 
Fingers and everything else are crossed!

Thanks for the update zipster, it's so fab to hear all is going well and long may it continue that way!...:goodluck:

Dusty. xxx
 
Wee update.
son has started getting a rash on his hands. Doctor has put this down to his aza and says he is poss photo-sensitive. Now prescribed hydrocortison cream snd a 50+ factor suncream. We have been in contact with IBD nurse and she says doc looks as tho he has hamdle on it!
Anyone heard of this? Found post on the aza forum and hav posted there too.
thx in advance
 
Hey zipster,

My two haven't had issues with rashes and Aza but I have read of others here that have developed rashes when exposed to the sun. Certainly photosensitivity can be a side effect and the doc may well be on the right track. If so the treatment makes sense.

Good luck and let us know how he gets on.

Dusty. xxx
 
"Ferrous furamate" anyone have anything on that that i should worry about?
Aparently the wee fellas iron levels are low and this is the solution to this.
 
Hi Zipster

I don't know about ferrous furamate but wanted to mention the possibility of using a cast iron pan. I found some info in February re increasing your iron levels by cooking in a cast iron pan (link is below for the thread) - I was really surprised at increased amounts of iron found in food cooked in cast iron pans! This may be coincidental but, since February, I've been using our cast iron pans more often (not daily but 3-4 times/week). My sons HGB levels have been low since his diagnosis last May but his last tests showed normal HGB levels. But, as I said... may just be coincidence???


http://www.crohnsforum.com/showthread.php?p=442142&posted=1#post442142
 
Hi Zipster, thanks for the update. My son has just been started on the Azathioprine this week after an operation at Yorkhill. Has your son been ok on it apart from the sun sensitivity? Andrew has been on an iron supplement as well the last few months - it's called Sytron (not sure if that's the same as yours). It's in liquid form which I believe is less likely to cause constipation and my son has had no side effects from it at all. The IBD nurses at Yorkhill seem really nice!
 
Hey zipster,

Sarah was on Ferrous Fumarate at one point. She had no problems with the tablet itself but she has always had issues with Folic Acid. At the time she was already taking a Folic Acid supplement and they thought taking Ferrous Fumarate would kill two birds with one stone. It didn't because Ferrous Fumarate only contains small amounts of Folic Acid. :facepalm:

You are in the UK??
If so it might be worth your while looking into a supplement that has now been made available on the market there. It is a iron preparation that has been available in Sweden for quite a long time now and it contains non heme as well as heme iron. Heme iron has a far better absorbability than non heme iron. It is called Globifer.

Dusty. xxx
 

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