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Modulen IBD 12 YEAR OLD

Hi folks.

My daughter has just been discharged from hospital after endoscopy top and bottom. The findings were she has a minor ulcer and possibly be crohns. Waiting for the biposy results to confirm this but I'm not convinced.

She has 15% body mass over last year with only one symptom Diarrhoea in the mornings. No need to rush to toilet, no bleeding, no stomach cramps pretty much normal child otherwise but severe weight loss.

She has started her new school and is worry child and I'm thinking more she has anxiety or depression disorder. Always thinking about school homework etc and pressure .

The doctors kept her in and concluded the route they are going to take is Crohns for now and give her modulen IBD.

I have reading and great to see it works wonders. A week in she is now finding it very difficult and hard on us as I have 2 other kids and hard not to eat infront of her

Please can I get some thoughts on if you can eat at all with modulen even if its soft food like mash etc or do I persist with it

Thanks

Riz
 

my little penguin

Moderator
Staff member
We have a parents group here
Sorry you had to join
But anxiety /depression would not Cassie the changes they saw on the scope .
The biopsies will confirm
You don’t have to have bloody diarrhea for crohns
Ds was dx at 7
He had constipation but stopped gaining weight and then slowly lost weight
Weight loss is a big red flag since kids are designed to gain weight and grow

Formula only is very hard for kids but does heal the gut

Soft food won’t help
Has to be some sorta of formula to work
Things we did for ds was take it one day at a time
Formula (peptamen jr -US version of modulen )
Is difficult
So we had crushed ice woth table sugar sprinkled on it to chew (ask Gi)
We created cotton candy out of table sugar and dumdum lollipops (ask the Gi )
Some allowed gum
Didn’t make the kiddo sit at the dinner table
They can watch tv/movie phone time etc... more than other kids
Shopping weekly for a something special since your not buying them food
The first week is hard
Second week is harder then it gets ok until the last week (8-9)

Hugs
Ds is now 15 and has done formula only 3-4 times in addition to medicine

Once the biopsies-are back they will need to decide on a maintenance treatment
Since once you reintroduced any solid food (including mush ) the inflammation will come back
 
Thanks so much for your reply.

Sorry newbie here.

Your information is useful. Can I ask did your child suffer any stomach cramps taking modulen and gained weight ??

My daughter is determined but was in tears as everyone was have lollipops etc being this weather and she is stuck drinking formula.

It's hard on us parents. I dont know how to cope with it all. Your right though you have to stay strong I guess. But how does she manage it in school.

Thanks
 

my little penguin

Moderator
Staff member
When Ds was formula only for 9 weeks he did not gain weight
Once food was reintroduced he started vomiting again
He stayed on peptamen jr (2-3 ) a day plus food
After the formula only was over plus 6-mp (they don’t use thus drug any more due to lymphoma risk in boys )
He finally gained weight on steroids with some formula plus food and kept it on with formula /food -and remicade
This was one year after dx

The Gi May allow hard candy
Ask
As far as school
We put the formula in hydro flask containers so it stayed cold and he could use a straw to drink it during lunch
He was only 7 so he told his friends it was a protein “muscle” shake 😁🤣

He also has life threatening food allergies so was used to not being able to eat when other brought in surprise (not safe ) food
Cotton candy helped
As did “pure sugar “ candy
We did Silicon molds in different themes and melted table sugar plus water
Then pour into molds to harden
He drank 2 shakes for breakfast
Two for lunch at school
One after school
Two for dinner
And one before bed
Not being hungry helps some
Fancy tossable coffee cups woth lids
In different festive themes
Any party straw I could find
The more the better

Change the focus on busting with friends /family to fun not food
So activities
We have had to do this for years
It’s hard to do
But focus on people
Also just one week
Make it just this week
Not 8 weeks
Talk about what the week end prize it
We have money not much
He saved it for a big toy at the end
Little presents each week as well

He probably had belly cramping
He has had that abd still does almost 9 years later
 
Hi, my son was 11 when he went onto the modulin diet. He had his 12th b'day whilst on it, sadly no cake for him. He was extremely ill before he started modulin and felt a lot better once he was on it, so this helped him keep to it. I feel for you all, it takes it's toll on all the family. I remember not wanting to eat in front of him, but after a few weeks he started to cook for us and liked to sit with us while we ate. (and smell our food!!)
He wasn't allowed to eat anything else and only drink water.
He added cold decaffeinated coffee and Crusha to flavour it. You can make it into ice cream too.
Good luck
 
Hi, my son was 11 when he went onto the modulin diet. He had his 12th b'day whilst on it, sadly no cake for him. He was extremely ill before he started modulin and felt a lot better once he was on it, so this helped him keep to it. I feel for you all, it takes it's toll on all the family. I remember not wanting to eat in front of him, but after a few weeks he started to cook for us and liked to sit with us while we ate. (and smell our food!!)
He wasn't allowed to eat anything else and only drink water.
He added cold decaffeinated coffee and Crusha to flavour it. You can make it into ice cream too.
Good luck
Hi Maya Louise,

Thank you so much for taking the time out in replying to my post.

Absolutely it's hard as a family but she has been on it for 6 days now and she is feeling slightly better. Can I ask did your son have 2L of the stuff which is a challenge in itself and did he gain weight and how long till you introduced food. I feel so sad she cant eat with the family but really want her to gain weight and be happy. Although her mood is much better nowadays. How did manage with school?? Using crusher and nesquick which is fine for her.

Waiting for biopsy results as even the consultant was unsure if she actually had crohns but thought best to go with the plan until results.
 
Hi,
My son was on modulin for 6 weeks and he had 2 litres a day. It was challenging for him to drink that amount but it got better. They reintroduced food over I think 2/3 days then he was eating normally. Yes he did gain weight and had a lot more energy. He began modulin at the beginning of the summer holidays and so school wasn't too much of a problem. His school was very good and it was kept in the fridge in the medical room and he could drink it there too.
 
Hi,
My son was on modulin for 6 weeks and he had 2 litres a day. It was challenging for him to drink that amount but it got better. They reintroduced food over I think 2/3 days then he was eating normally. Yes he did gain weight and had a lot more energy. He began modulin at the beginning of the summer holidays and so school wasn't too much of a problem. His school was very good and it was kept in the fridge in the medical room and he could drink it there too.
Hey Maya Louise

Thanks for your post

I'm glad to hear your son got better. It's really difficult not having my daughter to eat anything and its getting really hard for her. Shes on her second week. I was reading there are some parents who give soft food plus modulen and get good results. She has a trip on Wednesday too.
 

my little penguin

Moderator
Staff member
Please do not do soft foods plus formula without your Gi permission
Solid food (soft or hard ) can affect whether the gut heals
It is not the same as straight formula
They are formula only diets for a reason
It’s proven the most effective and week two is the worst
Until your at the end

Please follow your docs orders

Some kids do longer term maintenance woth formula plus food (that is AFTER THE FIRST 6-8 weeks of formula only - not instead of )

This is done in addition to meds or woth put meds but after the inflammation is down
FroM the first 8 weeks of formula
 
Please do not do soft foods plus formula without your Gi permission
Solid food (soft or hard ) can affect whether the gut heals
It is not the same as straight formula
They are formula only diets for a reason
It’s proven the most effective and week two is the worst
Until your at the end

Please follow your docs orders

Some kids do longer term maintenance woth formula plus food (that is AFTER THE FIRST 6-8 weeks of formula only - not instead of )

This is done in addition to meds or woth put meds but after the inflammation is down
FroM the first 8 weeks of formula
Hi

Thanks for your encouragement.

2 days into week 3 and she is going so well bless her. The formula has helped her to gain weight which is amazing. First time in 1 year after losing 14% body mass she has hit 40kg on scales. Now she sees the benefit she has more drive to do the full course bless her. So proud of her

Thanks
 
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