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Medication or Watchful Waiting?

Hi Guys,

My 7-year old had a scope & was diagnosed with Crohn’s in mid-August, after a summer of progressively worsening diahoerra. She was immediately put on the EEN diet & reacted very well to it. She has gained weight, & has no on-going issues. She’s on week 6 of EEN & is having the odd snack of crackers/pasta.

Today we had phone-call with dietician & clinical nurse. They advised us that the statistics show that 60% of kids within the first year, will go back into flare. I asked about the other 40% & they said some kids are fine after EEN & do not need maintenance medication. I was really surprised about this 40%. It’s not really the impact of low dose medication I’m concerned about but moreso the notion of the child believing/knowing she has a long-term chronic illness.

Has anyone on here opted for watchful waiting rather than diving into maintenance meds? It seems once kids are put on meds, there’s not much option to come off them to see if they’re necessary. Any advice, gladly appreciated!

my little penguin

Staff member
It’s not recommended tonit treat children with Crohns
Your child has Early Onset IBD (EOIBD) which is anyone dx under age 10.
Children under age 6 have VEOIBD
The younger the age the more likely the disease will morph into something severe

My kiddo was dx at age 7 as well
And now is almost 15
Watchfulwaiting or not medicating doesn’t change the fact your child has Crohns
It’s something they will have for life regardless of how you medicate

It’s better to try to get a jump on things and keep the intestine healthy as long as possible
The rate of surgery is 75% in 5 years of being dx for kids
So far so good for ds
But it’s here have hit that statistic

Boston children’s
Children’s of Philadelphia etc
Have tried 80/20 or 90/10 as maintenance therapy

Meaning you do the 6-8 weeks of een
Then add 10-20% if your kiddos calories as solid food and the rest 80-90% as formula
This is done as long term maintenance med

It has worked for a few - but not many

The issue with not treating and stopping Een
Is the flares tend to come back worse and are harder to get under control
Add in the second time around
Een may not be enough
And she may need steriods to calm the flare
Maintenance meds such as methotrexate take 8-12 weeks to work
So now your on steriods for three months or Een three months of both

Remicade takes 6-8 weeks to work so you need a bridge therapy (steriods Een ) if 6-8 weeks minimum
Humira 3-4 months

Most GI start maintenance meds when you start Een or steriods so the maintenance med can take over when your ready to stop Een

Ds did een multiple times
Less effective each time
He takes Stelara and methotrexate
Plus 50% calories from elemental formula
One he stopped Een he stayed on supplemental formula to keep his weight and growth normal
This has worked very well
He is at the 75% for height which is huge

Most ibd kiddos we know irl are very short
And despite being 16 look about 9
(They refuse to drink and supplemental nutrition including boost or special k or pediasure)

Ds doesn’t understand why
He looks normal due to formula

Talk with your child’s GI first
Nurses and dietitians don’t dictate therapy
Especially your child’s therapy

Maybe partial Een would work for your kiddo

But accepting she now has Crohns for life is tough
The sooner you do that and she does as well
The better
In general, people don't get cured of Crohn's--in order to keep it in control, they have to make either a permanent dietary change and/or go on medication.

The first thing to do is to make sure she's in complete remission.

Since EEN is working for your daughter, you may find that you can keep it in control with partial EN from 50 to 80% of her diet. Many people are a little too eager to go back to a normal diet after a short EEN course. If she goes straight back to a completely normal diet and no medication, the Crohn's will very likely return.

Some people do eventually find a diet other than formula that works for them, but that can be hard to figure out.
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Hi My Lil Penguin,

Thanks for your reply. I will certainly talk it all through with the GI. My only experience with I’ll-health is prostate cancer. My Dad has it, opted for surgery. My two brothers, then 24 & 30 has their PSA rested & both elevated. Older brother (living in USA), opted for surgery (sperm bank, incontinence remains). Younger brother had same advice living in Australia, but decided on watchful waiting - has had no increase in PSA level in 12 years since, & now has 4 kiddies. Makes me really consider watchful waiting might be a more careful decision for a 7 year old who’s whole identity could revolve around being “sick”, if we’re giving her daily meds. I know she’ll have 1/2 EEN drinks per day, but I don’t really consider that medication. Our other two (not crohnsies) have one a day at the moment as it is!!

Thanks for your help

my little penguin

Staff member
Please understand your child is “sick” with Crohns
She will have bloodwork every 3 months regardksss
GI visits in clinic every 3 months to monitor her
Upper /lower endoscopes every 2 years
Sometimes once a year
Imaging MRE /pillcam every 1-2 years

Multiple hospital stays/ER trips
This is with the right meds
It’s not something that if you ignore by not giving meds
That it will go away

Taking the right meds allows your child to be as normal as possible
Leading as healthy as possible life and saving her precious intestines

It’s not something you can hide
Sorry but doctors will explain it to her in detail
Many times over

I realize your struggling woth this
It isn’t cancer
It’s a life long disease
That your Dd will need to learn how to manage effectively and live a normal life

Ds has more than “just Crohns”
He got the bonus surprises
Extra intestinal manifestations (EIM ) of Crohns
Juvenile Arthritis and Sweets Syndrome
For him
The EIM are far worse than the Crohns
And have been for a few years

Being “sick” with Crohns
Is not the same as being sick with any other normal kiddie illness
I'm glad to hear that your daughter is doing so well--it's great that EEN was so effective for her.

That 40% stat is interesting; I haven't heard or read that before, but I can imagine it might be true based on my daughter's history. My daughter started having Crohn's symptoms when she was 7 but she wasn't diagnosed until much later. For 5 years, she had flares with diarrhea and joint pain, along with very gradually dropping off her growth curves. Each flare was followed by a long period with no symptoms, sometimes for more than a year. So you can see how it would look like no treatment was necessary.

Unfortunately, damage was being done inside, and by the time she was 12 she was terribly sick--her intestines were inflamed and ulcerated to the point where they weren't able to absorb anything and she became severely malnourished. She had microperferations in her small intestine which led to an abdominal infection that put her in the hospital for a week. She ended up being out of school for 7 months, and needed 2 months of EEN, steroids, Remicade, and methotrexate. She finally started regaining weight and feeling better after months of treatment.

Four years later, she's doing great on Remicade and methotrexate, but she does have a short stricture due to scar tissue caused by the damage that she had when she was 12. That will never go away unless she has surgery. Now that she's doing better, we actually have tried reducing her meds. She went off methotrexate after a year on it, but she flared. She went back on it and that ended the flare. So it is possible to try backing off on meds. (You do have to be more careful with biologics, since you can develop antibodies to them if you stop them, and then you wouldn't be able to go back on them.)

Obviously, this is just anecdotal evidence, but if you do decide on a watchful waiting approach, I would be sure that you put an emphasis on the watchful part--that is, I would want to do frequent scopes and MRE's to make sure that damage isn't happening internally.

Good luck with your decisions about treatment--I know it's not easy.


Well-known member
Hi there! So glad EEN is working for your child. It really is an amazing tool.

There have been a few studies that suggest that half EN could be a good tool to maintain remission and some centers here in the US have used alternating periods of EEN alternating with periods of diet. So it is an intriguing option but if you are going to use this option, I would just make sure you are at a top notch facility well versed in IBD in kids and who will be vigilant about disease monitoring.

I would want some more information on what the dietician and nurse mean by "fine". Does this mean the kids feel fine? Clinical remission - absence of symptoms. Does it mean bio chemical remission? Feel fine and returning normal blood labs? Are their fecal markers returning normal? Des fine mean endoscopic remission? Feel fine, normal biomarkers and no evidence of inflammation on scope? Or the best yet, does fine mean deep remission otherwise known as histologic remission. Histologic remission is clinical remission plus bio chemical remission, plus endoscopic remission AND a return of normal biopsies taken during endoscopy.

As PDX pointed out in her daughter's experience and many, many others hear will tell you that you can be in clinical remission and still have ongoing inflammation. Not as many but still a good number of people could be in clinical remission with normal biomarkers and still have ongoing inflammation.

All I am trying to say is that you need a better definition of "fine" in order to make your decision of how you want to proceed and really have to make that decision in partnership with your GI with a good plan for monitoring along the way.

As for your concern over your child taking daily meds and being a "sick" child. Honestly, my girls are the healthiest of their bunch. They pop a few pills a day, get their infusions and they are off and running. They don't miss school, they are honor students, in band, varsity sports, church youth group, go on mission trips, and, and, and. Aside from diagnosis, my girls have not been inpatient or had surgeries etc. Honestly the thing that has affected my older daughter's life the most is a pesky hip and the surgery to fix it and that had nothing to do with her Crohn's.

This may be a U.S. thing but I have chaperoned many overnight school and church youth trips and you would not believe the medicine trunk that gets packed. It seems like every other kid is on a medicine for something or another. Taking pills (at least here) is not something that would necessarily label a child as sick.

Good luck with your decision. The first year is the hardest.


Staff member
This may be a U.S. thing but I have chaperoned many overnight school and church youth trips and you would not believe the medicine trunk that gets packed. It seems like every other kid is on a medicine for something or another. Taking pills (at least here) is not something that would necessarily label a child as sick.
I definitely agree. I don't know if it's just a US thing (I suspect some part of it is!) but every kid seems to have some issue requiring meds! My daughter has a lot of issues - most of them more troublesome than the Crohn's. She takes a LOT of pills but says she never thinks about them.

She says what affects her life most are disease flares - and those happen more if your kiddo is not on medication!

I will echo what the others said - it is best your child comes to terms with the Crohn's. It's not going to go away and I have been on here for 5 years and absolutely NEVER heard that 40% statistic. Honestly, that is just too high to be right. I don't think most kids stay in remission unless you start a maintenance medication - and I bet there are statistics on that.

Statistics also show that biologics are the most effective drugs and the earlier you treat the disease, the better. Additionally, aggressive treatment is associated with fewer surgeries and complications.

The way I think of it is that meds can cause side effects - those are just a possibility. But the disease can cause damage and complications (like abscesses, fistulae, strictures, obstructions, perforations), which are not just possible, they're probable.

So treating the disease is very worth it.

I would definitely get a second opinion if your GI does not want to put her on a maintenance medication. Though honestly, I'd be surprised if that was the case, given her age. In younger kids, IBD tends to be more aggressive.

Good luck!