Modulen - is 8 weeks normal on modulen only diet ?

Hi, my 8 year old daughter was diagnosed last week with Crohn's. We are very lucky, in that, she has been diagnosed pretty quickly and the extent of Crohn's is described as "mild". I have read some very harrowing stories of people suffering for years before a diagnosis.

She has been put on a Modulen only diet for a period of 8 weeks. Except for water and clear boiled sweets she is not allowed to eat or drink anything else at all. 8 weeks seems an extremely long time to me and I would appreciate any info from others who have tried this.

My daughter has also been prescribed Mesalazin in the form of Pentasa 500mg one to be taken 3 times a day. Unfortunately the tablet is too big for her to swallow and I have been advised not to break them as they are a controlled release tablet. We are waiting to hear from our doctor if there is an easier to swallow form of the drug available.

I am anxious that 8 weeks abstaining from food is just going to be unachievable for an 8 year old.

Thank you for taking the time to read.

Hi MunnyNat,
Welcome to the forum but sorry you had to find your way here.
Yes the normal EEN time most doctors do is 6-8 weeks.
My girl was younger at dx and very sick, so it was a blessing to us for her EEN.
At least we knew she was getting her "food".
EEN is wonderful because it gives the bowels a rest and time to heal.
You need enough time to allow for this to happen, hence the 6-8 week time frame.
My 6 yr old girl still does EN but also eats food.
Her EN we treat like medicine.
She has to have it and that's that!
BUT.................she does put a stink once in awhile and I don't come down on her.
I hug her and TRY to explain the reasoning but she still has to have it.

Now when she was on full EEN we BRIBED! :rosette2:
Any thing we could think of to get her thru a week we used as a treat/bribe.
These kids go through enough and I see no shame in rewarding a good job.:thumright:

Please feel free to join the Parents Forum.
http://www.crohnsforum.com/forumdisplay.php?f=49

Lots of Parents who know what your going through.

Thank you. Nothing at all wrong with a bribe, I have already used rewards for her and at the moment she's responding well to the magazines and little toys. I've promised her a proper present (Lego friend's probably ) when she gets to the end of the 8 weeks. I'll join the parents group too. Thanks again.

Welcome
My DS was dx at age 7.
Also was dx as mild and started on peptamen
Jr for 9 weeks plus pentasa
He also couldn't swallow pills
Pentasa comes in capsules that can be opened and poured on applesauce
Not ideal but still works while they learn to swallow the empty capsule
Ccfa has a brochure on teaching kids to swallow pills
Plus oralflo is a cup that lets them swallow anything

That said 5-ASA including pentasa as typically not enough to control crohns as a monotherapy especially in kids who tend to have disease progression .
Most GIs equate 5-ASA to giving an aspirin for a brain tumor
Not going to hurt much but not going to help much either

Good luck

http://www.ccfa.org/resources/pill-swallowing-techniques.html

Link on how to swallow a pill
We used rice
Tic tacs
M&ms
And jelly beans
Fwiw now after three plus years DS can swallow 4-5 pills at once

Hi, Mummynet. My son was 8 when he was diagnosed also [ now 14] and do feel for you.
Modulen is usually used for 6 - 8 weeks. It can be hard to get used to to start with, but once they are getting the full amount children are usually fine with it. As it is giving all calories and nutrients children shouldn't feel hungry. One tip we use when Josh has been on Modulen is to use Crusha syrup, he doesn't like the taste of the Nesquik flavours that come with it. Josh had clear boiled sweets or clear jelly as a treat. Sometimes he just wanted something in his mouth other than liquid.
Josh took the beakers of Modulen into school with him. He did sit separate from his friends, as that was his choice. But he got through 6 weeks of doing this. We also did a week in Majorca taking tins of the stuff with us, and he managed just fine. Children surprise you in how well they cope with changes, especially if it makes them feel better.

You will find that by giving her bowel a rest, it will make her feel so much better. It has always worked well for Josh.

As to the Pentasa, Josh had major problems with taking them when he was first given them. I know you are told not to crush them, but we did, as it was the only way that Josh could manage them. We started by crushing and adding to yogurt, slowly increasing the size of the tablets that he was taking. Minute bits to start, then quarters etc until he could manage the whole tablet. This did take a few weeks, but he got there

You could ask to switch from Pentasa to Sulfasalazine which can be formulated in a liquid. Then it would be no prob. They are very similar meds.

That said, both drugs are not considered to be overly effective in Crohn's disease.

My daughter has done 2 rounds of 6 weeks of exclusive enteral nutrition in this past year at the ages of 3 and 4. It seems to help quite a lot to relieve her symptoms and keep her growing.

A few tips - see if she is allowed a vitamin supplement (we used Vitamin D gummies) and give her one (or another allowed treat) after she finishes a bottle of Ensure. (carrot and stick approach)

Find a flavor she likes and stick with it. For my daughter it was ONE flavor and ONE brand. Any deviation messed with her taste buds.

Don't pour it into a glass. You taste it more that way.

Do use a straw. Maybe buy a collection of cute or fun straws. We used colored bendy straws. It helps to bypass some of the taste buds.

Also keep in mind that you could get the formula which has extra calories. Then you could decrease the physical amount that she needs to drink. Just make sure she gets a little extra water. We used "plus calories" formulations. 1 bottle = 355 cals.

I hope it works well for her!

I am very thankful for everyone's thoughts , tips and information. As you all sadly know, it is a massive punch in the guts to have your child diagnosed with an serious or long term condition. I am a control freak by nature and having no control at the moment is driving me totally insane. I have spent hours every night into the small hours of the morning researching the disease and trying to educate myself. So all your help and advice is immensely appreciated. I will follow up on your suggestions , all of them are very useful. You are all very kind, Thank you.

All of the knowledge you are gaining right now will not go to waste. You file, somewhere in your brain, every known side effect, every time table, every anecdote from another parent, every medical definition. Unfortunately, there will be times when that information is immediately necessary. With this disease it is probably good to be a control freak.

On the positive side, because of the things you can't control, you learn to appreciate all of the good days. To encourage your child to participate in anything they can do. To stop and give hugs. And hopefully to laugh. A lot. And sometimes, after a while, you learn to give yourself a break. To sit down and watch a mindless movie with your loved ones instead of doing the research. Or, you know, a hobby beyond knowing more than your specialist about the disease That last part happens when you trust your medical team.

I'd be lying if I said that as I parent I don't think about the disease and my child much of the time. There will be a point though when you can turn off that part of your brain.

For now though, there is grief and anger and shock. That comes and goes, too.

Thank you Pilgrim, you are spot on with the grief anger and shock. Add to that "denial" and it pretty much sums it up. I am now researching conditions/diseases which mimic or are wrongly diagnosed as Crohn's . Desperate I know and I don't wish to offend anyone, but I am still really really hoping that the diagnosis is wrong and she has a curable rather than incurable disease. My heart goes out to every child and every parent affected by this.

That was one of the first things I asked after hearing the results of the colonoscopy. "Is it possible that it could be something else?" I got the short list of possibilities while we waited on the biopsies. When multiple granulomas were found throughout the biopsies I was then assured it was definitely Crohn's full stop.

How did you get to your diagnosis?

Don't worry, you're in good company. We have much denial around this forum! Once you get your diagnosis sorted out, then it's denial about coming out of remission, or denial about a med not working or sometimes even reverse denial - like you won't let yourself believe that things are getting better.

We'd be prime fodder for psychologists.

Yes we got our diagnosis following a colonoscopy and histology report. The report specifically refers to a single granuloma on the right side of her colon , is this the defining feature of Crohn's ?

She has an MRi next week to see if the problem is also present in her small intestine.

I do still have a sense of perspective though and I am grateful that she is actually quite well at the moment and that she is able to walk, talk , play etc and hasn't been diagnosed with a terminal illness. I have to pull myself together as things could be so much worse I know.

Thank you for your support, I hope your daughter is having a good spell at the moment and that she stays that way , preferably forever, she is so young to have to deal with everything she;s been through already.

Hi MummyNat and welcome to the forum. :ghug:

I am so sorry to hear about your daughter. Such a difficult and heartbreaking time for you all. :heart:

You have been given fab advice so I will just touch base with the Pentasa, it can be dissolved in water so that may be an option.

Granulomas: In the context of all the other boxes being ticked then the presence of granuloma/s is the clincher in a definitive diagnosis of Crohn’s.

Thinking of you and hoping your lass is soon on top things and feeling much better, bless her.

Dusty. xxx

Thank you DustyKat. I have to admit to being scared about what the future may hold for all of our children. I can see from many of the personal accounts on this forum that many children and adults who have experienced significant ill health and undergone drastic surgery and have tried a plethora of medicines already, are still facing uncertainty in the future. I take my hat off to each and every one of them. Thank you for your support.

These are the dissolving instructions:

How to take it:

Swallow the tablets whole without chewing or crushing. You can also place the tablets in 50mL of cold water, stir rapidly and drink immediately.
Do not cut, crush or chew the tablets.

http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/fpcpentt/$File/fpcpentt.pdf

Click to expand...

Dusty. xxx

Thank you , we'll give it a go today .

Hi Mummynat,
have you talked to your pharmacist about advices for the pills? They may help in that regards. If another format is available, they may be able to give it right away or they can contact the GI the same day or same week for approuval.

Mummynat - there are many stories that you will read on here that are so far from anything that you would hope for for your child's future but I just wanted to say that although Crohn's is still not a good diagnosis (as in no cure yet) it is a better diagnosis than it used to be with so many more effective treatments and more promising ones in trials. I'm in no way trying to invalidate your very reasonable fears or your understandable feelings of grief and shock but I just wanted to set some of the stories that you will read here against that backdrop of huge improvements in treatments. I know that this is sadly not true for all of the young and newly diagnosed patients but with the treaments available today there is a much better chance of changing the course of this disease such that newly diagnosed patients like your daughter will very hopefully not have the same experiences that earlier generations of Crohn's patients have had. But it is my understanding that that does require that the treatments available are used in the best way possible which I understand to be a top down approach so, with the caveat that I do not know as much about the treatment of Crohn's in children your daughter's age, I am as others have said a little surprised at the choice of Pentasa to treat your daughter. I know there are many other people on this forum with more relevant experience of that age group but I do think it's useful to get second and even third opinions and to learn about typical approaches in treatment for a child your daughter's age. You already know this I can see but you are your daughter's best advocate - and I can tell you are doing an amazing job at that! This disease requires vigilance and monitoring symptoms and how well the treatments are working - and if not you have to be prepared to try the next thing. But you are in many ways probably the person who will know whether this is the case before your daughter's doctors do. Trust that instinct.

Liquid diets can be a great treatment, especially for children where ensuring nutritional intake is even more important, and I think the time period is very significant. You can liken it to treatment with antibiotics in that you may feel better very quickly but that doesn't mean the job has been completed and you need to finish the course of treatment. With Crohn's the liquid diet gives the bowel time to heal but the timescale for healing is quite long and continues well after you first experience relief of the symptoms.

Sending my very best healing wishes your daughter's way

Dear 24601. Thank you for your reply of hope. I must say I am still immersing myself in the Land of Crohn's and I do have hope.

I don't believe in much but I do believe in my instinct and it has been screaming at me not to go down the Pentasa road. I can't quantify why or put together an intelligent objection, it just doesn't feel necessary or right.

I am very interested in the Top Down approach to treatment , it is just so logical. Do you have any information on places where I might find out more about this.

I have read a little about the MAP vaccine and I'm not sure yet how excited I should be about this, I'll reserve judgment until I've read a bt more. I will be talking to my daughter's consultant again soon as she had an MRi today on her small bowel to look for signs of the disease there so I should be talking to the Doc within the next day or two and I am going to express my concerns about the Pentasa route as intelligibly as I can without sounding like a babbling lunatic.

I am very grateful for people like yourself and all the others that have taken time out of their busy lives to care about mine and my daughter's. I said before, that I don't believe in much but I do believe that the kindness of strangers is what defines us as humans. So Thank You.

Here are some papers and abstracts which should give an idea of the rationale behind top down vs. step up treatment:

http://www.wjgnet.com/1007-9327/full/v14/i36/5523.htm
http://www.ncbi.nlm.nih.gov/pubmed/20210762
http://www.ncbi.nlm.nih.gov/pubmed/23797128
http://www.ncbi.nlm.nih.gov/pubmed/12617888
http://ecco-jcc.oxfordjournals.org/content/7/11/923.long

And one on pediatric Crohn's
http://www.ncbi.nlm.nih.gov/pubmed/24909831

I don't think it's entirely clear cut because there isn't, I don't believe, a reliable way of differentiating between the patients who will progress to severe disease and it's entirely natural to want to avoid the side effects and risks of the medications. So, as they say in these papers, it's a matter of balancing the risks of the treatments against the risks of the disease.

Your daughter is currently on the best treatment to induce remission in children - one without any side effects, except of course the emotional and practical difficulties of living on a liquid diet. If she can manage the liquid diet with all your support and encouragement and hopefully the positive reinforcement of feeling much healthier and better in herself, then that is so much more desirable than using steroids - having taken prednisolone a few times, I would say that I would never let a child of mine take it (you know if there was any other way) and I personally would be much happier to progress to adalimumab instead.

It's important to have the discussion with your daughter's GI as to why they feel pentasa is the right choice for her as a maintenance treatment - on the one hand I wouldn't be too worried about side effects relative to other maintenance meds (sorry I do know you are worried about that but I felt I should say that clearly, and not to say you don't have to watch out for side effects from any med) so it probably won't hurt her but on the other hand I understand you not wanting her to take anything she doesn't have to (and I do remember Pentasa pills as being especially unfun to take) and you may well be right that it could be unnecessary as I'm not sure how much good it will do. I don't believe it is a medication that has proven terribly useful for treating Crohn's. Also, and I'm saying this because I really didn't know to ask this early on in my diagnosis, you'll want to understand what signs of the disease they are already seeing in her bowel at this stage because there may already be indicators about the course her disease is likely to take - for example if they are seeing strictures, fistulas or panenteric inflammation. And it's good to know from the outset how they are planning to monitor her disease activity and determine whether her inflammation is well controlled.

For anyone newly diagnosed I would, based on my experience, say that one of the most important things is setting that benchmark in your own mind of when you were healthy. Sometimes with an illness like this that can take a long time to get to diagnosis you find that it is actually hard to remember what being well meant but hopefully you do remember how your daughter was when she was healthy and there will be some objective things that you can measure in terms of what she used to be able to enjoy doing, energy levels and I think just as her mum you will know how she seems in herself when she is well. I would advise anyone that you now have to make that your target - to get back to that state. I know that there are many stories here that will make that sound unlikely or impossible but it has to be the goal and you need a doctor who will work with you towards that goal (and not someone who will say "well of course she has Crohn's so we can't expect for her to feel the same"). I think as Crohn's patients our mantra in respect to treatments needs to be "if at first we don't succeed, try, try again" or perhaps "if at first we don't succeed, move on to the next one". Because there are a whole range of treatments available and while you usually start with the ones that work for the greater number of patients, you never know what will work in a particular individual. I'll be honest it is exhausting, but that resolve to leave no stone unturned is what can get you healthy and keep you healthy.

About the MAP vaccine, I completely understand you not being sure. I can tell you that I think it is promising but that I don't think anything is guaranteed. Some people have had really positive results with the anti-MAP antibiotic therapy and I believe that the study that was done in Australia had very positive results - despite the fact that they contradicted themselves and drew negative conclusions about the efficacy. I would really very much like to see the trials completed for the test and the vaccine. If it is a cure then it's certainly our best chance to get one in a relatively short timescale. And while it may not be a cure, it could still be a very helpful treatment or part of the treatment for a proportion of Crohn's patients. I think the idea that Crohn's is related to MAP bacteria and Johne's disease in cattle is one that should be fully investigated and that these trials and studies are all important even if they only put to rest this hypothesis. Plus in the scheme of things the money they say they need to complete this research is so small, I feel pretty keen on fundraising for it and I think it's enough to be able to say to people this *might* help people with Crohn's. It's funny but for a disease that is supposed to effect only a small proportion of the population almost everyone you meet seems to know someone. Or perhaps that's just one of those funny perception things that happens once you are diagnosed. Anyway I like to think that quite a few people would be happy to donate a pound or two.

Also just to say you are not a babbling lunatic and even if you go into a doctor's appointment and for example find it overwhelming and forget what you were going to ask or quite how you were going to ask it (writing down notes helps somewhat!) you still mustn't feel like that. You are a rightly very concerned mum and deserve all the time you need from your doctor for explanations and reassurance and answers and we Crohn's patients and parents should get to ask whatever questions we like and no one should ever make you feel they are silly or invalid. And yes I am saying that because of some experiences that I have had and also how my mother has told me she felt at times with me as a teenager and young adult. I just want you to know that you have lots of Crohnies and their parents standing with you in spirit when you ask whatever questions you feel are right! :ghug:

I'm sorry that this is such a long reply and I hope it doesn't seem crazy and over the top. I just really don't want other people to have the same experiences that I had and hope that I might be able to say something to help.

p.s. totally on the same page re:the kindness of strangers. I might not believe in much but I do believe in that.

Hi Mummynat,

I just wanted to put these links here as I felt they might be useful to you - though they can be found elsewhere on the forum

There's an interesting article on guidelines for the medical management of pediatric Crohn's posted by Malgrave here: http://www.crohnsforum.com/showpost.php?p=826545&postcount=141

It talks (amongst many other things) about the lack of data to support pentasa as a maintenance drug for children with Crohn's and the need for close monitoring of CRP, ESR and fecal calprotectin to ensure complete remission and the need to set a low threshold for treatment escalation.

It also talks about the ongoing studies to look at the predictive indicators of serious disease and says that until those results become available that the following can be considered as potentially predictive of poor outcome (and therefore the need for early introduction of more aggressive therapies):

*deep colonic ulceration on endocscopy
*persistent severe disease despite adequate induction therapy
*extensive (pan-enteric) disease
*marked growth retardation >-2.5 height Z scores
*severe osteoporosis
*stricturing or penetrating disease
*severe peri-anal disease

Also regarding the Modulen drinking, lenny and my little penguin pointed me to to research done by CHOP which suggests you can get as good results inducing remission by using 90% formula with 10% caloric intake from normal diet. I don't believe that research has been published yet but has been referenced in several places including this presentation here and this document produced for gastro docs and nurses

I thought you might be interested in case you feel that modification would make this 8 week period feasible or for the future. It's good to know too that a little snack here or there shouldn't be a deal breaker for EN or cause you to move to steroids.

This article here also make interesting reading (another link from my little penguin - thank you!) if you want an overview on enteral nutrition. I think that one talks about using 50% liquid diet and 50% normal food to maintain remission - studies done in Japan and Canada indicate that it doubles the number of patients in remission at the various end points of the studies. Just in case that info interests you for the future whether you were interested in using that alone or in combination with infliximab or another med, it is another maintenance option which thanks to these studies now has a defined protocol. The European version of this repeats a four week course of enteral nutrition every 3-4 months as a maintenance therapy.

Thanks so much for your message!