Getting through six wks if Modulem

[GillP]

My 10 yr old son was diagnosed with crohns this week, the camera results showing ulcerations starting from his mouth to the end of his large intestine. I am devastated. We have been started off on working up to 2000ml of liquid milkshake (modulem) type drink intake per day for the next six weeks. This is our third day and we are both emotionally shot to pieces as he really struggled to get 1000ml into him. It tastes like white chocolate and sickly with an unpleasant smell. The realisation is slowly creeping up on me how serious this is. The docs and dieticians' advise this is the nicer course, but if all else fails he will go on steroids. I'm looking for support really from other parents whose child is refusing to drink it and general feedback on going down the steroid route. Feeling so confused I have an older daughter who has glaucoma, I'm a single parent and I am self-employed running a busy admin business from home. Juggling all this just feels it is going to be one hell of a hill to climb. We live in the UK. Thanks for listening.

 

[Maya142]

I'll tag some parents whose kids have done formula only (exclusive enteral nutrition): my little penguin, crohnsinct, pdx, Farmwife, Tesscorm and Sascot.

My daughter has only ever done supplemental enteral nutrition to gain weight. She was unable to drink enough formula, so we had to use an NG tube. She was taught to insert the NG tube at night and got her feeds overnight. Then she pulled it out in the morning before she went to school. There are videos online of kids inserting their own NG tubes. You can also choose to keep the NG tube in for the next six weeks.

My daughter has also been on steroids, many times. They come with lots of side effects: insomnia, chubby cheeks, increased hunger and weight gain (that one she liked), stomach pain, moodiness etc. They did work like magic for her and the side effects annoyed her, but they weren't too bad.

Typically, steroids are used as little as possible because they increase the risk for infections and have all sorts of more serious side effects: osteoporosis, adrenal insufficiency etc. However, if you have to use them, you have to use them and it's not the end of the world.

I'm sure some parents will chime in soon with tricks to get your kiddo to drink formula.

In our experience, formula is best cold and drunk through a straw. Using a cup with a lid might help because then he won't be able to smell it.

 

[fuzzy butterfly]

Hi i dont have a child with ibd. Its me that has it.So sorry for your son and you. Hugs to you both. If he does not like the taste would it be possible to change the drink ie to fressubin or similar. I have fressubin n quite like it to me its the most like a normal milk shake. That seems an awfull lot for a child to drink. I only have 2×200ml a day. on saying that i do eat normal food too. Best wishes

 

[my little penguin]

Big hugs my ds was dx at age 7.
He did 9 weeks of EEN
He drank peptamen Jr ( similar to modulen in the uk ) .
The first two weeks were the hardest as well as the last week.
I thought there were flavor packets you could add to modulen .
Ds did end up on steroids three times since then over the years . We try to avoid it as much as possible . Breaking up the shakes like meals helps
Ds currently does mostly formula with a little food due to Gastroparesis . He drinks two shakes for breakfast , two for lunch , two after school and two for dinner .

We did bribe him the first time he did EEN
Rewards for each week he finished
Second time a few extra shopping trips
Now no rewards

It does get easier
What maintence meds did they start your child on ?
Typically those need started the same time as EEN so that the meds can take over when the EEN is finished .
Most maintence meds (6-mp/aza/Mtx ) take 3 months to fully work
Biologics take 6 weeks .

Hugs

 

[Optimistic]

Hi there. I'm sorry to hear about the diagnosis. It really is a shock, isn't it?

My son was 14 when he did EEN. He had a hard time coming off steroids so this was recommended. I'll be honest the first few days were our own personal hell. We finally changed how we talked about it. Gone was any reference to 6 weeks and it was replaced with we will try this today. We paid him for each one he drank and offered a bigger reward at end of each week with a final final bribe. We went with that approach bc begging, yelling, threatening, reasoning, etc did nothing to help the cause. Oh the power of video games (or whatever your son loves!)

We also obtained samples of many different flavors and brands from stores, Drs and Internet. There is probably a list on this site. Find one he finds more tolerable. They are very different in taste, texture and even how the body responds.

We talked about EEN way too much and made it too big of a focus in the beginning. We also made mistakes eating in front of him and talking about food. Don't, for 6 weeks. The rest of family can sacrifice a bit for him.

Some people have a hard time physically the first week or ten days and can have fatigue and naseau on top of the emotional strain of not eating / having to drink all of this formula. It gets much better as the body adjusts and starts to heal.

A year later my son willingly drinks about 30% of his diet, sometimes up to 6! Drs credit the EEN for big role in eliminating symptoms and reducing inflammation.

Hang in there. It gets so much better. Go now and offer what he really would like to have!

 

[my little penguin]

Optimistic in the uk nutritional drinks require a prescription from the doctor ( unlike here)
There aren't different kinds..... Only modulen is about it for the semi elementals and they have to get it from a pharmacy ( chemist )
Elemental wise they have e028 splash and neocate - but again they need a script

 

[Optimistic]

Amazon uk sells Ensure and Boost. Bought it for my son last summer while traveling so we didn't have to pack it. Maybe they don't anymore?

 

[Maya142]

And I know it depends on the doctor, and some GI's are absolutely fine with Boost and Ensure, but our GI said M should use a semi-elemental formula for EEN, if she was to try it. Her choices were Peptamen and Pediasure Peptide.

For that reason, I'd definitely check with your doctor before trying a different formula, even if you are able to get Boost or Ensure (which do taste better than semi-elemental formulas).

 

[my little penguin]

Yep same here had to be semi elemental once he was dx with crohns
While we were investigating what was wrong the Gi was ok with any formula including boost ensure etc.., but not once he was dx .

Every Gi is different though

 

[Optimistic]

Of course you talk to dr. Fascinating how different approaches are used.

Once they uttered the words Crohn's at Boston children's they handed us a kit that included all types of elemental and semi, even some that were concentrated in tiny packs, like an applesauce package. We never tried that one. Now I wonder how that would work for someone who couldn't get it down

Good luck. Hope you and your son are both getting some good rest and are ready for a successful day of EEN!

 

[pdx]

Big hugs to you--what a hard week for you and your son.

Our doctor recommended supplemental shakes after my daughter's diagnosis, but she just couldn't drink them, no matter how hard she tried. We ended up going about 6 weeks with just Remicade (no EEN or steroids) to see if Remicade could do enough on its own. My daughter lost a lot more weight during that 6 weeks and got even sicker (ending up in the hospital for a week). Our doctor finally said that we needed to choose EEN with an NG-tube, TPN, or steroids, so we chose the NG-tube.

Having the tube in place was really uncomfortable for my daughter for about 2 days, and then she hardly noticed it (and she's a kid with a lot of anxiety and physical sensitivities). She chose to have the tube in all the time, so that she wouldn't have to reinsert it herself. She ended up using it for 10 weeks, and it worked very well for her. Her abdominal pain ended just a few days after starting EEN, and she gained 20 pounds in that 10 weeks. It was such a relief--for her and us--to end the struggles over drinking the formula, and she was also so happy to be pain-free.

After the 10 weeks, her doctor wanted her to continue supplemental EN at night, and by then my daughter was so comfortable with the tube that she was able to put it in herself each night, and then take it out each morning. She learned to do it by watching this video:

https://www.youtube.com/watch?v=YJIFOCbPTjo

So that's a long way of saying that I highly recommend trying EEN using an NG-tube; I wish that we had started it the day after my daughter's diagnosis, rather than waiting so long.

We didn't do any incentives during the EEN phase. We did bribe her later to try putting in the tube herself, and then paid her for every night that she did supplemental EN.

Good luck to you whatever you decide to do. It takes a while, but it will get better, once you find a treatment that works for your son.

 

[Willowcat05]

My son has done Modulen three times now for 8 week each time. first time he tried to drink it but just couldn't hated the smell and taste even adding crusha didn't help so he ended up with ng tube which was the best decision we made. He was a bit scared to go to school with it in but once he was there he was fine I would recommend asking for ng tube to be placed as steroids have a lot more side effects and are harsher on the body . I know its a lot to take in just now but it dose get easier xx

 

[Sascot]

My son did the Modulen on diagnosis - 8 weeks via NG tube. My son was almost traumatised trying to drink it so we ended up with the tube. What a relief that was, he was happier once he didn't need to drink it. He managed really well - I fed him at meal and snack times through the bolus, just picked him up at school lunch time and dropped him back.
It really is worth doing. It certainly got rid of all my son's tummy pain and allowed him to be symptom free for a long time while the meds started working. Good luck

 

[GillP]

Thank you all so much for your kind words. When we started the 5 x 360ml of Modulem I set up a 20p per milkshake jar, a daily score off chart and am working on "today" only. I feel lifted by all your responses and a massive thank you. Today is a little better and feel more positive. I have watched the video of the ng and will be my next approach if this fails.

 

[fuzzy butterfly]

Hope things get easier hun. Im sure they will. Best wishes. ☺

 

[Sascot]

Good luck. We were given no option on the NG tube. My son was told if he couldn't drink it then he had to have the tube. Easier when the doctor tells them to do it

 

[Tesscorm]

My son was older when diagnosed, 16, and he did EEN for six weeks as well. In our case, his GI used an unpalatable elemental formula so we weren't given any option other than to use an NG tube. I think, not being given a choice and being told by the GI, does make it easier.

He also learned to insert the ng tube each evening and, once he learned, it literally took seconds to do (and even less time to remove in the morning). He ingested all his formula overnight and was allowed liquids during the day (these included broth, jello, freezies, etc.). Although he did struggle with hunger at times, the broth and freezies allowed him to 'eat' with friends at lunch during school.

I also kept the final date from my son. Although he had a general idea of when he would be ending the exclusive period, I thought it would be harder, towards the end, to be counting down 10 days, 9 days, etc.

We also did not eat in front of him, sometimes the rest of us would eat while he was in another room, other times, we'd eat at different times so no set 'dinner' and someone could be watching tv with him, etc.

Distraction was a big help with hunger...

Good luck! It certainly isn't easy but, if he can manage, well worth it. :ghug:

 

[crohnsinct]

Want to add my voice to the chorus. EEN was a savior for my older daughter (did EEN at 12) when Remicade couldn't get her to remission on it's own and we had trouble weaning steroids.

For my younger daughter (did EEN at 11 and again at 12) it is the only thing that works.

Both of my daughters drank their formula but they were allowed the more palatable Boost and Ensure. We did 6 weeks exclusive...the only other item allowed was water and one piece of chewing um a day.

For my girls it helped them feel so much better, that was all the motivatin they needed. At the beginning we tried not to eat in front of them but by the second or third week they were going to restaurants and celebrations with us.

I agree with everyone on the NG tube. My younger daughter actually was asking for the tube thinking it would be easier for her to drip her formula overnight and not have to think of it during the day. Once the first week was over, she stuck with drinking. She has also done the theory twice.

Few hints with drinking:

1 - serve cold...tastes better
2 - serve in a covered cup - less smell the less the awful taste
3 - drink with a straw...goes faster and it shoots the formula past the taste buds
4 - like others have said don't concentrate on 6 r 8 or however many weeks...at the beginning we did shake by shake...then day by day then week by week.

Warning! The last week or so is just as hard as the first. They know the end is near and get very antsy.

Warning #2! The reintro to food is very slow...we did an 80/20 diet so only 400 calories of food and still 6 shakes a day for 4 weeks and slowly reduces formula and reintroduces food.

 

[GillP]

Phew so the next step will be after six weeks reinroduction to food. The great or not so great thing is that by the time he comes off it, he is going on holiday with his dad two weeks later. After 6 six weeks of liquid, I do wonder how he will cope going on holiday. Any feed back would be really appreciated. x

 

[my little penguin]

What meds is he going on?
The minute food is reintroduced he will flare again
This has been proven in study after study .
Nothing worse than flaring on holiday

 

[CarolinAlaska]

Hug. It is a tough road to travel. My daughter started by drinking too - had to try a bunch of different flavors. She ultimately couldn't digest the drinkable ones, and ended up needing an NG tube to take the predigested kind. After 8 weeks she was able to drink a half and half mixture and tolerate it. It took a couple months before she was able to eat much in solids, but I think that was when the 6MP kicked in. I second cups with lids and straws, and paying per cans drank. I think she earned about $80 US by the time she finished her 8 week course. The NG tube was a trial. She never got the hang of self-insertion and ended up having to be put under to get it in. She wouldn't go many places with it in because she didn't want anyone to see her. It was a tough road.

 

[Catherine]

Due to glaucoma in family. You may want to discuss his personal risk of glaucoma with a eye specialist. The use of steroids are linked to an increase risk of glaucoma.

 

[Optimistic]

Actually the holiday at the end might give him a great emotional boost. He too is dealing with the diagnosis and trying to sort out what it means. He can see on the internet the worst parts of Crohn's and has probably been involved in some medical conversations he really didn't want to hear. I hope he has a great time!

You dr will guide you but I'm not sure he will be ready or willing to jump right into the full food regiment at the end. My son talked about the steak and burger he wanted for his first meal but he really choose a banana and something bland he could chew! He had been advised to ease back to let his body adjust and see how well he tolerated the change back to food. For peace of mind maybe you could ask what the plan is when he finishes?

Just think - you are now a few more days down the EEN road!

 

[Tesscorm]

This was the reintro diet we were given from our GI. While reintroducing foods, we were also gradually tapering down the amount of formula. Amount may differ as my son was older but, when on the exclusive period, he was getting 3000 cal/night. During the reintro period, we tapered down to 1500 cal/night. He then stayed at this level for the next two years, in addition to his regular diet.

1. low fibre foods for 3 - 4 days: white bread, rice, noodles/pasta, potato, plain muffins, plain cereal. He was allowed a very small amount of toppings (butter, cream cheese, spoonful of tomato sauce with no chunks or seeds, etc.)

2. low fat proteins for 3 - 4 days: chicken, eggs, beef, fish, etc.

3. soft fruit and veggies for 3 - 4 days: applesauce, no skins (apple peels, potato, etc.), no membranes (the 'skin' around orange segments)

4. dairy and/or alternatives for 3 - 4 days

He was told to always avoid seeds, nuts, popcorn, corn, fruit/veggie skins (although, now, he does eat fruit/veg skins without problem).

Also, re going away... I've always sent my son some Boost shakes when he travels. Partly because his treatment was supplemental enteral nutrition and partly because, if he did become unwell, he could replace meals with the shakes. Boost is not as easily absorbed as the elemental or semi-elemental formulas but would still, likely, be easier for him to tolerate if he feels unwell.

 

[Optimistic]

Packing some formula for the trip is a great idea, regardless of how dr wants him to reintroduce foods. My son is probably at about 30% of calories from formula now. I can always tell when he isn't feeling well because he increases the amount of formula on his own. Having extra around could be useful for your son.

 

[malorymug]

Our holidays have changed quite a bit since the crohn's diagnosis. I have 2 boys, 15 and 14, with my oldest having crohn's. He goes on holiday with us, but he sleeps a lot more. He also takes more frequent breaks throughout the day, and on about day 2 or 3 he spends the whole day inside reading, playing video games or sleeping. He tries to keep up but he cannot. We will often divide up with my husband taking my youngest for activities and me staying with my oldest and doing something more low key.

I don't have experience with taking modulem on trips but it sounds like a good idea.

 

[JBA]

After diagnosis my son had 8 weeks on Ensure. We tried all the different flavours but in the end he only drank banana. We found the same as crohnsinct..serving it cold etc. We had a weekly chart stuck in the kitchen and we ticked off the drinks as he had them and there was some sort of treat each week.
Introducing "normal" food went smoothly. His goal was to eat a bacon buttie....which he managed after about a week. He ate a lot of chicken, rice and carrots in the beginning. The consultant wanted him to carry on with 2 ensures a day but by that time it had got to the point that just looking at one made him physically sick. We tried some yoghurt drinks and some other ensure-type drinks the nutritionist told us about but he can't take those either. It is so hard but the food-free 8 weeks kick-started an improvement in his symptoms.

 

[my little penguin]

Realize once remission is hit
Crohns kids do keep up
That's how we know the meds are working
When it's the parents wanting things to be quiet /rest for a bit :lol
Hope your trip is good and your having more success with the drinks at this point

 

[Farmwife]

Hi, chiming in late but just wondering how it's going.
My dd does EN/EEN often and its been a big help!