remission with EEN Finally Over

[ladyphoenix1010]

Sadly, it is time to move the next line of treatment for my 11 year old daughter. Though she has been in remission for nearly a year with Pediasure alone, her most recent CP lab test came back with high inflammation. She hasn't had any symptoms, but hasn't gained weight in the last two months.

We have an appointment in 2 weeks to determine the next steps. All options are pretty much on the table, since we haven't had to do anything but Pediasure so far. I think anti-inflammatory and/or steroid medications are likely candidates.

Any and all stories/advice welcome!

 

[my little penguin]

Probably steriods as short term to reduce inflammation while the longer term
Meds are started
These would mostly likely be methotrexate
Most GI no longer use 6-mp or imuran due to lymphoma risk
Mtx takes 8-12 weeks to be effective so steriods would be used during that time
After immunosuppressants are biologics
Most insurance plans require step up (failure or cheaper meds)

5-aza (pentasa etc..) are not approved for Crohn’s disease and only treat the surface
Crohns goes through full thickness
So please remind the GI if they suggest 5-asa
How they plan to treat the full thickness of the intestine that will still have inflammation

 

[my little penguin]

Forgot
You went to three weeks of food and one week een right ?
Basically to induce remission you could go back to full een (skipping steriods )
While waiting for maintenance meds to work
Or stay full een no food
Or ebb (10% food 90% formula )
That’s tough for a teen though

 

[crohnsinct]

I am not surprised. Was she exclusively on EN? A whole year?

I am with MLP. Sometimes they use EEN to induce remission while they are waiting for maintenance meds to work but if she was on EEN and she still has inflammation then that is off the table and I am guessing steroids to induce and while waiting for maintenance med to kick in.

Any talk of scopes and imaging so they know what they are dealing with? It might make the difference between immunomodulators (Methotrexate) and Biologics (Remicade, Humira etc).

I would want to have more information about what exactly is happening inside, disease location, severity, fistula's, strictures etc.

 

[my little penguin]

Cic
She was only doing one week a month of een and three weeks of solid food
So not true 100% een

 

[ladyphoenix1010]

She was on EEN for 12 weeks, then gradually reduced to the point to doing EEN every other week to get down to one week per month.

It has been a year since scopes. At that time there were "focal noncaseating granuloma formations" throughout her digestive tract, but minimal "chronic architectural changes."

 

[my little penguin]

Once you add more than 20% food
Een is proven not to be effective
So if she was only doing it every other week
She could switch back to try to induce remission

But definitely insist on scopes/MRE /pillcam
To know where she is at presently after a year

 

[crohnsinct]

In that case I might opt for EEN to induce remission and while waiting for maintenance meds to work. Easy for me to say because I am not the one who has to do it. My younger daughter did EEN three times and I have to say with each course it was a harder and harder sell.

I would want scopes and imaging so we knew exactly what we were dealing with.

Sorry you are facing a therapy change. It is hard to find out something stopped working. Good Luck!

 

[Maya142]

I would also agree - you need scopes to see how bad things are. It's good to "see" what is going on before trying something - that way, when you re-scope you'll have some idea of how much things have changed. And it may change the treatment plan - if there is a LOT of inflammation, they generally go straight to biologics now.

Like others have said, 6MP/Imuran are being used less and less now. Methotrexate is used instead. It is either a shot or pills. The shot has a teeny-tiny needle and is not painful. It is given once a week. Some kids have nausea with it, but Zofran and folic acid can be used to minimize side effects.

In terms of biologics, usually they start with Remicade or Humira. Remicade is an infusion given every 4-8 weeks. Humira is an injection given every 2 weeks (can be given every week if necessary). Remicade tends to work more quickly and is usually preferred by kids because Humira is painful. With Humira it is the actual medication that burns, not the needle. There are things you can do to reduce the pain if that's what the doctor chooses.

While you are waiting for her maintenance medication to kick in, EEN or steroids are good options. If she's willing to do EEN again, I'd go with that.

My daughter was already on biologics when she was diagnosed with Crohn's, since she had already been diagnosed with juvenile idiopathic arthritis. Her JIA was under-treated and we watched her get sicker and sicker and progress from just a few joints to almost every joint in her body being involved. Her JIA went from moderate to severe .

So once she was diagnosed with Crohn's, we wanted to treat it aggressively to prevent complications. Her GI put her on Remicade and MTX. It took about 3-4 infusions before she was feeling better. 8 months later, we redid scopes and they were MUCH better. ALL the ulcers in her colon were gone, the granulomas seen on biopsies were gone too. In fact, her colon looked "perfect" - like she didn't even have IBD. She still had mild inflammation in her terminal ileum, but it was also much better.

Good luck!