EEN cycles with or without meds...

[Pilgrim]

Our little one had been on about 50% EN and AZA. She developed pancreatitis from the AZA and so we are done with AZA, 6-MP, etc.

So, what we are doing is returning to a 6 week cycle of EEN, and then down to a 50-75%EN for 6 weeks and then back to 6 weeks EEN and so on. It's an experiment. But I'm starting to understand that with Crohn's, many things are.

We do have the option of looking at adding Methotrexate or Humira. Because she is young, I was hoping to hold off a little on both as I have read that a person can build up antibodies to Humira (not sure about MTX) and I want to save some meds for later.

Anybody go this route?

 

[Clash]

The IBD nutritionist that my son saw was really big on EEN to EN cycles and even suggested this may be a treatment course on its own. But that is the only time I've heard of it as a solo treatment.

You don't develop antibodies to mtx as it is in the same class as imuran/6mp(immunosuppressant), though it is not a thioprine.

 

[Pilgrim]

It's funny. I had read a lot of the research on EEN and thought it would be good to try the cycles. Usually, I don't speak up (I'm learning) but the GI was very receptive to the idea.

Thank you for the info on MTX - that helps. I don't want to burn all of our bridges in the first year with the meds.

 

[my little penguin]

One thing to keep in mind
Does she flare at 50-75%?
If so then you are allowing the inflammation cycle to constantly repeat..
Equals scar tissue or strictures or fistulas .
Also does the full EEN take care of all of the inflammation or is it left to simmer
Tesscom 's DS did partial EEN as a therapy for over a year or two but it never got rid of the low lying inflammation just let him feel better.

Also be aware EEN tends to work really well the first time but not as well the second time and the younger the age the more severe the disease course .
So while you may use up all your meds in the first year
People have been on some of these meds humira included for many years.
Add in new meds are always being added .

Not saying not to try cycling EEN but make sure the Gi has a plan to monitor the inflammation you can't see and not just go by her outward symptoms.

Farmwife tried EEN as a monotherapy for a while
I think they still cycle it on and off but with other meds.

 

[Tesscorm]

Yes ^^^ S did six weeks of exclusive and it did eliminate inflammation from some areas and put him into clinical remission (no outward symptoms). His maintenance treatment was 1/2 dose of the formula and a regular diet (no restrictions on calories, etc.) - he did this for two years. However, MREs consistently showed 20-30 cm of simmering inflammation (it didn't worsen but didn't improve any more). When he transferred to his adult GI, this GI was concerned that it was just a matter of time before the simmering inflammation caused more serious issues and we started remicade.

So, do try the EEN and EN but, as MLP said, be sure she is monitored by MREs or scopes (sometimes labwork does show a full picture).

:ghug:

 

[Pilgrim]

When I asked about monitoring, the GI said labs every 3 months.

Do you think this is reasonable?

I don't really know if she flared during EN. She had a lot of labs but she also had other infections, which messed up labs a little. She also is a tough case because her CRP was always fine (except right now but could be from an infection) - only her ESR really showed elevation and that is hard to rely on. It has been in the 20's for the past year, and went up to 60's before her scope to dx. Next visit we try fecal cal as another measure.

As for the full EEN, it seemed to help her symptoms. But again her ESR still remained up in the 20's. It went down to 22 at that point.

If she is monitored by scopes - how frequent? Is she too little for an MRE? I don't think she could be still for it yet.

 

[Tesscorm]

I don't know how reliable the labs would be, especially as you're saying her CRP is always fine. S's CRP reached as low as 6.5, under 8 is usually normal range but our GI likes under 5 for crohns. S's ESR was usually high teens, low 20s (going by memory only, I think normal is around 10??) so S's labs weren't way off either, yet the inflammation was still there. The way he was while on supplemental EN, if he didn't already have a diagnosis, there would be no indication that he was sick at all. Even the odd 'off' day(s) could easily have been attributed to a bug as he always felt better a day or two later.

Adding these meds is such a scary decision so it's truly hard when they look and feel good. :ymad: There are still moments when I wonder if the inflammation would truly have evolved to something more serious??? But I think that's just denial on my part. Also, S was much older, almost 17, at dx and was already very physically mature. My understanding is that crohns is usually more 'severe' with kids and, perhaps, this is due to the fact that they are still developing and changing and the disease will develop and change with them. Might be tougher to get under control when dealing with more serious issues?? I don't want to scare you (because I feel like I probably am ) but just be careful with monitoring. There are people who can have simmering inflammation and be fine for years... but, not sure how often this happens with kids.

As far as testing - S has never had FC, I'd like to believe it would be a good indicator and think it usually is (although our GI doesn't use it often)??? If she can't stay still for an MRE, perhaps ultrasounds would give a idea (not as clear as an MRE but better than labs, I think). Not sure about how often for scopes...

You can also try to use more vague signs as added indicators... ie, S's HGB was always just slightly below normal (normal now that he's on remicade), fatigue, canker sores, joint pains, etc. It's easy to justify these types of symptoms when they come and go...

:ghug:

 

[Farmwife]

Farmwife tried EEN as a monotherapy for a while
I think they still cycle it on and off but with other meds.

This is what we do but its for multible reasons.

1 In hopes of keeping inflammation down.
2 hoping it helps the Remicade work better.
3 graces stomach doesn't always want to be nice:voodoo: so she goes though periods of not wanting eat. The EEN give us peace of mind that she's getting what she needs.
4 She has a g-tube that makes it easy to feed her.:kiss:


You have the same worries my hubby and I did.
We were scared of running out of meds.
If we could have lived off full EEN for the next 10 years I would have but her disease(s) thought other wise.

The clincher for me was the reality of IBD is NOT the what ifs of the future but treating the disease here and now.
So we started the treatments.
I still hate it but now were talking about what sport to put my dd in
and a year ago that would have never happened.:thumright:


Ill tag a few
iamaboveitall and EthenClark used EEN a lot.
Both don't stop around much but maybe they'll see this.

 

[CrohnsKidMom]

Pilgrim, we don't have any experience with EN or EEN, but we had a similar story with aza, where my son had a reaction. Like you, we bypassed 6mp thinking he may have the same reaction, and wanted a maintenance med to kick in sooner, rather than later. We went to MTX injections, as our GI tends to use a step-up approach, except in severe cases, so no biologics yet. He has been on MTX for over a yr now, and has had some minor side effects, but overall it has worked very well for my son. Hope you get your daughter on a med that works well for her and she starts feeling better soon.

 

[my little penguin]

If she is 4 they can do the mre with movie goggles so she won't move.
Our place puts them in a papous thing and has the room decorated for kids.
So maybe imaging and fecal cal since blood work isn't reliable .
Most kiddie hospitals have the goggles now

 

[Pilgrim]

She will be 4 by our next appt., so I will ask about the MRE. They have an ultrasound scheduled for that trip.

I'm not against the meds, don't get me wrong. Just not sure what to do, and I'm getting asked to make a decision.

I would love to have to make a decision about sports for her or even a full day of school. Will do what it takes. And of course want her to make her own decisions about surgery one day if she has to. Goal is normal life plus intact bowels if possible.

Crohn'sKidMom did you ever move from injections to pills, or does it stay injections with mtx? I heard through the grapevine (Canada's a small world) that a GI in Halifax does 12 weeks of EEN with patients. That is a long haul.

 

[CrohnsKidMom]

Pilgrim, you might be referring to our GI, Dr. Anthony Otley. At dx, we had the choice of 3 mths of prednisone, or 3 mos EEN with NG tube and only a few select clear fluids. We went the prednisone route, only because my son was 8 and we just didn't know if he-and we-could emotionally handle 3 mos of EEN. Our GI would not prescribe us oral MTX, as it is harder on the stomach and is not as well absorbed as the injectable. Dr. Otley is an excellent GI, extremely knowledgeable and wonderful with kids, but very strict regarding treatment. I agree an MRE might be a good option for your gal.

 

[Maya142]

We have done pills and injections of MTX and my daughter tolerated in the injections much better. Once she was diagnosed with IBD (she had been on MTX previously for arthritis), her GI said that the injections were definitely a better choice.
The needle is very small and my daughter says they are not painful at all (of course, she is much older than your daughter!).

The Humira injections on the other hand, are pretty painful. Our GI prescribes Remicade before Humira because most kids hate Humira so much.

Deciding which med is so hard. Hang in there!

 

[Pilgrim]

That is all helpful info. Thanks!