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Modulen diet

My 9 year old son is 2 weeks into the modulen only diet out of 8 weeks. Does this mean he’s crohns is more mild as they started this instead of the steroids? Once he has finished the 8 weeks and hopefully gets into remission I’m assuming he won’t need any medication? Also I have been told he would need a blood test every 8 weeks, any idea how to make him less scared of bloods as he freaks out and they didn’t manage to get the last lot we have to go back again.
I have so many questions but thought I would start with these
Thanks!
 
Hi, welcome to the forum. How did they diagnose his Crohn’s? If through colonoscopy (and other imaging devices), they should have handed you their results, and you may understand the severity of his disease by reading them. Ask also the doctors about it.

I think they did a fantastic job by starting him on modulen-only diet, instead of giving him steroids right away. Steroids will stunt his growth.

It’s more or less established that children with crohns are more likely to get into and sustain remission by being on EEN than adults with crohns.

Make sure he drinks enough and meets the calorie requirements of his age every day.

If you can find a good, experienced phlebotomist in the hospital, he/she can draw blood more successfully, less painfully, and more quickly than the others. If you can find such a person, I would suggest you to have a good relationship with him/her, explain the situation, so that he/she will draw your boy’s blood anytime it is needed.
When the needle is going in, and the blood is coming out, I suggest you to tell the boy not to look at his arm, just look elsewhere. It’s mostly psychological. Also, when the needle is going in, if he breathes in deeply, that can help. Another thing is you can ask the phlebotomist to use children’s needles that are thinner than regular needles.

If it so happens that after some time, they decide to give him a medication like 6MP, take it gladly. Your first goal should be achieving and sustaining remission. The damage active crohns inflicts on him will be far more destructive than the medications.

Good luck in your journey. You will all learn to live with this disease, accept it and do your best.
 
He had a colonoscopy and endoscopy and an mri and has confirmed he has it, they said they would send the results but I haven’t received anything as of yet and haven’t had the biopsy results. They told me the mri found 8 cm and also inflammation in the large intestine so will hopefully receive through the post soon.
does starting him on the modulen mean that he has a more sever case? The consultant originally told me that it was moderate but another one told me they couldn’t believe how well he looked for someone with it so severe and advance. I should have asked straight away but was trying to take everything in
 

my little penguin

Moderator
Staff member
Modulen is just a formula brand used in the UK /europe . Peptamen jr is used mostly in the US .
Similar to steriods it is used to reduce the inflammation so that a maintenance med can be used .
It does not mean mild disease .
It’s also not an either or sorta thing sometimes kids need een (exclusive enteral nutrition) formula only for 6-8 weeks plus steriods .

I would expect meds as well.
Typical from what I have seen on here for the UK is een then immunosuppressants such as 6-mp/imuran (aza) or methotrexate.
Some start straight to biologics such as remicade which is done by infusion.
Biologics are expensive so depending where you live in the UK depends on funding etc…

I am in the US so for my child (now adult ) we had to trial every lower level drug class first -show it didn’t work (aka let him get sick ) then move to the next . That took a year .
He started on 5-asa (Pentasa ) which is like an aspirin cream that coats the top layer of the intestine but does treat the full thickness .
Crohns affects the full thickness .
Then he moved to 6-mp with EEN /steriods . That didn’t work either once EEN was stopped symptoms came back and once they raised 6-mp to be therapeutic his liver levels went high so…
He switched to methotrexate injections which made him sick for 5 days every week plus developed new symptoms.
This meant more steriods and partial een
Finally a year later they gave him remicade at the age of 8.
And een could be stopped.
He was dx at age 7.

he is now 20.
I will say steriods are a necessary evil.
They stop inflammation.
Inflammation delays growth as does steriods .
The difference is damage isn’t already being done.
I can say partial een - for my child 2-3 shakes a day (peptamen jr, carnation instant breakfast, neocate jr etc…) since he was dx has given his body the extra calories it needed to grow .
So unlike most crohns kids who tend to be shorter than expected due to inflammation -my kiddo is 6 ft tall which what was predicted at age 2.

Your child has crohns
It’s life long .
Remission is good but meds /diet or combo are needed to stay there
It doesn’t go away .

they can have a normal life -mine is in college now .

as far as blood draws
Buzzy bee can help

Also seeing a child psychologist with medical coping . Your child will need blood draws every three months to monitor inflammation/liver /kidneys.
Let him pick where to have it done if you have a choice of blood draw places - have them use a butterfly needle .
Buzzy can distract the pain if placed above the draw site on the arm .
Save one arm for blood draws -he will develop scar tissue there and one arm for iv ‘s
Blood draws can go through scar tissue no problem
Iv sites don’t go as well if there is scar tissue .

ask any questions -most of us parents here have been doing this for a long time .
 

my little penguin

Moderator
Staff member
Other activities for kids with crohns
 
My 9 year old son is 2 weeks into the modulen only diet out of 8 weeks. Does this mean he’s crohns is more mild as they started this instead of the steroids? Once he has finished the 8 weeks and hopefully gets into remission I’m assuming he won’t need any medication? Also I have been told he would need a blood test every 8 weeks, any idea how to make him less scared of bloods as he freaks out and they didn’t manage to get the last lot we have to go back again.
I have so many questions but thought I would start with these
Thanks!
I understand being optimistic that you can just take care of it with the special diet and that would be the end of it. In a lot of ways, Crohn's can seem like it *should* act that way, like a simple infection with an easy solution. His symptoms are probably already down a lot with the Modulen diet (EEN).

Unfortunately, 8 weeks of EEN doesn't solve Crohn's, and symptoms will come back when a regular diet returns. That thickening seen on the MRI is real intestinal damage, and it doesn't go away fast. You may be able to keep symptoms down for a long time by staying on EEN, but most people are able to find a better option.

You and your doctor will need to find a long-term way of keeping the inflammation down, and usually that involves drugs like Remicade or Stelara.

Numbing cream (lidocaine) can help a lot with needles. The blood tests are important for monitoring how things are going.
 
I understand being optimistic that you can just take care of it with the special diet and that would be the end of it. In a lot of ways, Crohn's can seem like it *should* act that way, like a simple infection with an easy solution. His symptoms are probably already down a lot with the Modulen diet (EEN).

Unfortunately, 8 weeks of EEN doesn't solve Crohn's, and symptoms will come back when a regular diet returns. That thickening seen on the MRI is real intestinal damage, and it doesn't go away fast. You may be able to keep symptoms down for a long time by staying on EEN, but most people are able to find a better option.

You and your doctor will need to find a long-term way of keeping the inflammation down, and usually that involves drugs like Remicade or Stelara.

Numbing cream (lidocaine) can help a lot with needles. The blood tests are important for monitoring how things are going.
I need to read up more about it I think because I assumed he would have the modulen and then that would be it until the next flare up. The thing is, he has not shown many symptoms it was only that he had diarrhoea for a long time I took him to the doctors and he was c diff positive, 9 months later and he still had c diff and diarrhoea.. that’s when they suggested to check for crohns. What I’m really worried about is that as he don’t seem to be having all the common symptoms of crohns how will I know when to get him checked out.. maybe I’m just over thinking everything and super worried
 
Modulen is just a formula brand used in the UK /europe . Peptamen jr is used mostly in the US .
Similar to steriods it is used to reduce the inflammation so that a maintenance med can be used .
It does not mean mild disease .
It’s also not an either or sorta thing sometimes kids need een (exclusive enteral nutrition) formula only for 6-8 weeks plus steriods .

I would expect meds as well.
Typical from what I have seen on here for the UK is een then immunosuppressants such as 6-mp/imuran (aza) or methotrexate.
Some start straight to biologics such as remicade which is done by infusion.
Biologics are expensive so depending where you live in the UK depends on funding etc…

I am in the US so for my child (now adult ) we had to trial every lower level drug class first -show it didn’t work (aka let him get sick ) then move to the next . That took a year .
He started on 5-asa (Pentasa ) which is like an aspirin cream that coats the top layer of the intestine but does treat the full thickness .
Crohns affects the full thickness .
Then he moved to 6-mp with EEN /steriods . That didn’t work either once EEN was stopped symptoms came back and once they raised 6-mp to be therapeutic his liver levels went high so…
He switched to methotrexate injections which made him sick for 5 days every week plus developed new symptoms.
This meant more steriods and partial een
Finally a year later they gave him remicade at the age of 8.
And een could be stopped.
He was dx at age 7.

he is now 20.
I will say steriods are a necessary evil.
They stop inflammation.
Inflammation delays growth as does steriods .
The difference is damage isn’t already being done.
I can say partial een - for my child 2-3 shakes a day (peptamen jr, carnation instant breakfast, neocate jr etc…) since he was dx has given his body the extra calories it needed to grow .
So unlike most crohns kids who tend to be shorter than expected due to inflammation -my kiddo is 6 ft tall which what was predicted at age 2.

Your child has crohns
It’s life long .
Remission is good but meds /diet or combo are needed to stay there
It doesn’t go away .

they can have a normal life -mine is in college now .

as far as blood draws
Buzzy bee can help

Also seeing a child psychologist with medical coping . Your child will need blood draws every three months to monitor inflammation/liver /kidneys.
Let him pick where to have it done if you have a choice of blood draw places - have them use a butterfly needle .
Buzzy can distract the pain if placed above the draw site on the arm .
Save one arm for blood draws -he will develop scar tissue there and one arm for iv ‘s
Blood draws can go through scar tissue no problem
Iv sites don’t go as well if there is scar tissue .

ask any questions -most of us parents here have been doing this for a long time .
thank you for all the information! Will have a look into it all x
 
I need to read up more about it I think because I assumed he would have the modulen and then that would be it until the next flare up. The thing is, he has not shown many symptoms it was only that he had diarrhoea for a long time I took him to the doctors and he was c diff positive, 9 months later and he still had c diff and diarrhoea.. that’s when they suggested to check for crohns. What I’m really worried about is that as he don’t seem to be having all the common symptoms of crohns how will I know when to get him checked out.. maybe I’m just over thinking everything and super worried
Symptoms are often subtle with Crohn's. In general, occasionally treating it when it flares up is not a preferred way of dealing with Crohn's. Some long-term treatment is usually required, and you'll want frequent monitoring along with that to make sure everything is on track (esr, crp, fecal calprotectin, blood counts, occasional mri/colonoscopy, etc).
 

my little penguin

Moderator
Staff member
So think of the intestine like a standard garden hose you use outside .
It’s flexible and can move easily .
That is how stool moves from one end to the other.
Each time it becomes inflamed there is a strong chance scar tissue will form (thickening)
The thickened /scar tissue intestine is pvc pipe .
Which is very rigid /narrow so waste has trouble moving through (strictures )
This results in a obstruction (blockage ) , rupture (garden hose parts can not handle the extra pressure needed to push waste through the rigid parts ), fistulas form (intestine forms very thin tunnels around the rigid part -sometimes to other parts of the intestine -sometimes to the surface of the skin , rectum etc..)

add in inflammation cycles cause cellular changes each cellular change increases the risk of cancer .

so in a nut shell you should not just treat flares
The goal is growing kiddo with nice healthy pink unchanged intestine.
Maintenance meds like methotrexate can help with this .
In the Us at least pediatric Gi see kids every 2-3 months starting out until they are in stable remission . This means office visits with hands on approach plus bloodwork .
Because what works for one kid in terms of treatment may not work for another .

Once in solid remission docs tend the see the kiddo every 6 months while still running bloodwork every three months .

flaring -you will know
Once he feels better from drugs /modulen you will be surprised how sick he really was .

mine never had bad diarrhea
He just lost weight slowly or failed to gain weight for two years .
Then started vomiting every two weeks or so .

mostly tired
He swam competitively starting at age 6
And when he started remicade at age 8 his coaches could see a dramatic difference in his times for swimming .

your sons Gi will give you a list of when to call
Diarrhea more than x times a day for more than x days
Abdominal pain above a certain number
Looking pale
Exhausted
Fever above 100.4F
Etc….

finding the right med can take time
The potential side effects can be hard to read as a parent
But remember they are potential side effects similar to acetaminophen or amoxicillin
Both can be deadly for some kids but the majority take them just fine and get the benefits .

my kiddo is currently on Stelara and methotrexate.
After 13 years of this it’s just routine bloodwork
Gi visits every 6 months and scopes every 5 years
So it’s possible to get to normal
Give your self a minute to catch up
 
Last edited:
Hi everyone, my son has been doing well. He finished 8 weeks of modulen. Unfortunately a few weeks ago we had a week in high dependency due to a chest infection so he didn’t drink he’s last week. The dietitian weened him back into food over the course of 3 days. We have been going absolutely fine until last week. I noticed he was getting more tired and his energy levels dropped. He started going to the toilet slightly more but not as bad as before (only 2-3 times a day this time round) when I examined his poop there was blood in it. I have been trying to contact the IBD nurses at the hospital and I can’t get though, I’ve called about 20 times a day, left voice mails, emails and no responses. Yesterday he had quite a lot of blood on the tissue and in his poop. I don’t know what to do. I don’t think it’s bad enough to go the the hospital as it’s not pouring out, only comes out when he poops. Or is any blood coming out when you have crohns bad enough to go to the hospital. I just need clear information on what I should do and I can’t get it from anyone. I’ve just been sailing through this past week with guess work.
hopefully one of you guys have some answer for me 😢
 

my little penguin

Moderator
Staff member
Is he on any other meds ?
Een only works to stop inflammation while using it .
When it’s stopped it comes back .
Why did they stop it in the hospital ?
My child has done een while inpatient more than once.
Blood means he is inflamed again.
He needs a maintenance med
 
Nope he’s on no other medication and nothing has been suggested. They didn’t choose to stop it but where he was unwell with his chest he wasn’t hungry so didn’t drink for the whole week.
Oh no is that steroids?
also with the blood is it normal for it to be in the poop for a couple of days and then goes and comes back?
 

my little penguin

Moderator
Staff member
Maintenance meds are not steriods
These would be immunosuppressants such as methotrexate or 6-mp,imuran , Aza(all sister drugs ).
But they take time to work so he would need to go back in een or steriods until the maintenance meds kick in (takes about 3 months ).
Blood will come and go
Track number of bm and amount of blood /color.
Whether toliet water is red or just outside of stool or mixed in stool .
Next level after immunosuppressants are biologics
Those are more effective but more expensive so not used at first in the UK from what I have seen on here .
Remicade (infliximab) is given by infusion and tends to be what they use first for biologics for kids -easy to adjust dosing for kids since it’s by weight .
 
I'd say you have confirmation now that the Modulen diet helped and that he still needs treatment. What about going back to EEN while also pushing for something like Stelara?
 
I would like to try the een again but can’t get hold of anyone from the hospital at all. Do you think it’s worth me just going up to an and e and waiting in there to ask? That’s the only way I can think of getting in contact with them
 

my little penguin

Moderator
Staff member
Your pharmacy may have Fortips (?)
Basically any polymeric formula you can find in the grocery store as long as it’s marked complete nutrition for kids his age.
Modulen is semi elemental similar to peptamen jr
But any shake is fine for een .
Then maybe you can get ahold of the Gi to get a new script
And use the other in the mean time
 

my little penguin

Moderator
Staff member
Kids boost essentials is one we used before
You might be able to get that in the uk
Pediasure is another one kids like

Peptamen jr -is semi elemental
Neocate jr - is elemental so that tastes bad per my kid
Elecare jr - also elemental
Study after study shows the type of formula does not matter for een in kids
It all heals as long as there is no solid food
 

kiny

Well-known member
Michael Logan et al. showed at least 61 different EN formulas have shown clinical efficacy in crohn's disease. When talking to the authors, they were convinced remission can be achieved by many different formulas.

Analysis of 61 exclusive enteral nutrition formulas used in the management of active Crohn’s disease

EN's mechanism of action likely involves the exclusion of a certain substance present in processed or whole foods, in which case many powders readily available on the market could be used in a pinch if nothing else is available. I am not an expert on powders for infants, but many of those are likely to be lactose and gluten free, and one can assume they work just as well as EN used specifically for crohn's disease.
 
Hi everyone! So everything was going ok with my son until the last stool and blood sample. He has been going to the toilet more often with blood in he’s stool more frequently. Still no stomach aches or any other symptoms. He’s level in blood they have said are slightly raised and he’s fecal cal protection levels have come back to ‘exceeding 600’. Is that a high level? As they have now given me azathioprine to start him on. I’m really worried about giving him them as I have been reading all the side effects. (I know a lot of pills have size effects) I’m just worried that he has to start something at such a young age. Has anyone else’s children been on these? And did they get any of the side effects?
thanks
 

my little penguin

Moderator
Staff member
Ask about methotrexate
Still scary possible side effects
Stress possible
But lower risk of lymphoma
They don’t use aza or 6-mp much anymore especially in boys

fecal above 600 is high abd flaring
Aza they need to watch the liver closely
Monitor bloodwork every two weeks for the first three months and get levels to determine how therapeutic it is
My kiddo did the sister drug 6-mp 13 years ago at 7
Less was known about lymphoma then
But never got to therapeutic levels without elevated liver enzymes
Fecal cal and bloodwork will be the best bet on how things are going if he isn’t having symptoms

just like a kidddo with glasses doesn’t realize how things are supposed to look until he puts them on
Kids with crohns sometimes assume abdominal pain is normal and don’t complain

definitely talk to the doc

methotrexate can make them feel sick (flu like nausea )
This is why we love biolgics
Scary possible side effects as well
But quality of life (started these at age 8 now 20 )is priceless
Most don’t know he has crohns
And he is in college enjoying things
 

my little penguin

Moderator
Staff member
Ugh
If your in the UK
They tend to start on AZA
And hold biologics because of cost
In US biologics are also hard to get due to cost so it’s an insurance fight

methotrexate isn’t typically a crohns meds
Rheumatology tends to use it more for little little kids with juvenile arthritis
But it also works for crohns patients
So worth the ask
Either way no med is perfect
Except the one that makes your child feel better
And despite reading side effects remember those are only possible side effects
The med that gets the inflammation down the fastest is the one to use
Since he is so young
Damage once done can’t be reversed and he will have the disease for 80 to 90 years …..
Seeing a healthy kid with no bloody stool
Perfect pink intestines
Can happen and worth the fight
We are here for you
 

Maya142

Moderator
Staff member
Over 600 fecal cal is definitely high. Unfortunately, I do agree that if you can avoid Azathioprine, you should. My daughter was on it and it is not a fun drug to take. She has never had any issues with infections with any other drugs (any biologics, MTX) but on Aza, she got multiple infections and each time she did, she required antibiotics. And each time she was put on antibiotics, she got C. Diff. Plus, it didn't work for her IBD either. Biologics are MUCH safer though they are much more expensive, so in countries like the UK, they generally start with Aza or Methotrexate (MTX). I would go with MTX - it has a lower cancer risk and we've never had infection issues with it. Aza is not used much for adolescent or pre-adolescent boys in the US, because they have a higher cancer risk with it - a very rare type of hepatosplenic T Cell Lymphoma, which is very serious. This is in addition to the general lymphoma risk and the increased risk of non-melanoma skin cancer. So overall, biologics and MTX are much preferred.

If you do end of on Aza, in the US they do weekly blood work for several months, to make sure your child's liver values don't go up too much or his WBC count doesn't drop dramatically. My daughter struggled with nausea on it and of course the infections I messaged earlier.

It is very important to have your child on some medication that prevents progression of IBD because otherwise, up to 80% people tend to require surgery 5 years after diagnosis. I would push for MTX or biologics though, since they are safer.
 
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