Methotrexate or EEN

[LauraCarlos]

Hey guys so I am new year. I have a son who is 3 years old and has been diagnosed with Crohn's disease. He is now on steroids and does really good on them but he he has to get of them so his GI gave me two options. We can start methotexate or try Exclusive enteral therapy. I have been going back and forth this past week. He just started his first does of methotrexate last week and I am just worried that it might be too much for him. He has been on medications since he was born with other health issues. I am wondering if the enteral therapy might be better. Any thoughts?

 

[my little penguin]

Ds has done both
I can say EEN is easier with little ones
For short term
As in if you tell them to drink it most will
But psychologically is very very hard
Humans were programmed to want to eat
Smells and chewing are things that would need help with
There is crushed ice and chew sticks
At your child's age he can develop oral aversions since he hasn't been eating solids ing and feeding therapy maybe needed later
Short term would be 6-8 weeks

Methotrexate is hard as well needle sticks
And side effects of fatigue /nausea

Can you ask about partial EEN where it's 80/20
80 formula
20 food
That would be easier so he could have one real meal and a snack or two

In the end though it's what works for your kiddo
For some EEN is not enough alone
( my kiddo )
For some Mtx alone is not enough ( again my kiddo )
So while you spend time weighing the pros and cons on the end the crohns decides what works

 

[Maya142]

Is he able to drink the formula? My kiddo has not done EEN but has done supplemental EN (80-90% formula). She found EEN very hard. However, she was (and is) a stubborn teenager and it is easier on little ones. She had trouble drinking the formula (she was given Peptamen Jr and then Neocate, both of which taste pretty bad) and so had a feeding tube placed. The first few days were rough, but after that she adjusted well and was even able to insert the tube at night for her feeds and take it out in the morning.

With a young kiddo, you would just keep the feeding tube in as long as he needs it, if he is unable to drink the formula.

We found that if the shakes were cold, that helped with taste. Drinking through a straw and through a covered cup (cup with a lid) helped because then she couldn't really smell the formula.

Some formulas are more palatable than others. Boost kids and Pedisure are more palatable, but less "broken down." Some kids with IBD tolerate them just fine, but others need more broken down formulas - like Peptamen Jr or Pediasure Peptide. Those tend to taste worse.

Both my daughters have also been on Methotrexate, but only in combination with other medications. It worked very well for both of them. The younger one had a lot of nausea with it but MOST kids tolerate it just fine. My older daughter is still on it and has mild side effects. Zofran is given with it if your child gets nauseous. Folic acid also helps. Most parents give it on the weekend so your kiddo has a day to recover from it. It can be given as pills, a liquid or a shot. The shot has a tiny needle and is not too painful. We used ice and my girls didn't think it was too bad.

Buzzy also helped: https://buzzyhelps.com

Good luck with whatever you choose!

 

[crohnsinct]

We have chosen EEN over methotrexate before but not as a stand a
lone therapy. Rather we did it in order to taper off steroids as my older daughter even on Remicade was steroid dependent. The EEN worked wonders to get her to remission and the Remicade took over from there.

My younger daughter was given the choice of steroids or EEN to induce remission. She also chose EEN and it works wonders for her as well. However, most people find that after the exclusive period, when you start reintroducing food, the therapy is not as successful at keeping the kids in remission. For this reason most docs also start a maintenance med. For my daughter that is Methotrexate but I have to say it doesn't control her disease anywhere near as well as EEN.

Some people do an exclusive period and then taper down to 50/50 and have some success at controlling the disease that way. Others might try an exclusive period every 3 or 4 months and then a more aggressive taper to 100% food and cycle like that throughout the year. It is really more of an art than a science. Some docs have more experience using it as a therapy than others. You do have to make sure to monitor disease activity very closely. Optimistic has a son who has had success using EEN as mono therapy and as far as I know she is the only one so far. We may be going the cycling route with my younger daughter soon as Mtx is just not cutting it and why keep using it if doesn't really work?

 

[CrohnsKidMom]

My son was 8 at diagnosis, and our GI is very pro-EEN. We opted for steroids and MTX however, as we thought EEN would be too difficult for my son emotionally. If he was a toddler or preschooler, I feel quite confident I would have tried EEN though. The MTX injections did cause nausea however, but by noon the following day it would resolve. My son continues on a lower, oral dose of MTX now with Remicade. There are definite pros and cons to each route, and some have better success on one than the other. Sometimes it's a bit of trial and error to see what works, however with MTX you do have to give it some time-it can take several weeks for it to reach therapeutic levels.

 

[Optimistic]

Hi LauraCarlos. I hate to hear this about your son! It is good to hear that he has responded well to steriods and hope you can get him into remission.

My son was 14 when he was diagnosed so his situation may not be exactly applicable. Steroids were a miracle for him. His issue was getting off of them, so the dr added in full EN as a way to help ease the transition off steroids and onto what we thought was going to be a maintenance med. The drs he saw had lots of experience with EEN, EN, 100%, 80/20, cycling, and were very pro EEN in situations where they thought the patient was able and willing to comply. He eventually transitioned to about 80% EEN and 20% of calories from Specific Carbohydrate Diet, and slowly moved to where he is now, at about 30% EEN and 70% SCD. His labs, MREs, scopes and biopsies showed slow but steady progress and here we are a year and a half later, in remission.

It wasn't an easy journey. We tried about 10 different formulas to find one he could tolerate and would drink. Some were prescription (he was fondest of Peptamen Jr vanilla) and others were not. We adjusted our family eating behaviors to lessen the blow of him not being able to eat and took some other steps to help with the fact that really everything in life involves food. We had to negotiate, threaten, bribe, praise, encourage, etc and my husband even drank with him for a week. There is also the time investment of the extra monitoring our drs required because we used this treatment.

I have had a few others on this board contact me about EEN. I think one mom had a 4 year old. I'll check back in with her. The biggest piece of advice I have is to make sure you are working with a GI who has had success and knows how to work EEN with such a young child.

I'm sorry you had to join us, but hope to hear some good news about your baby soon!

 

[Pilgrim]

Our daughter was diagnosed at 3 and started EEN after diagnosis. It was hard but after 3 days she accepted it and achieved symptomatic remission while on EEN.

Eventually she needed medication and Humira works for her. Never used MTX.

 

[Sascot]

EN worked great for my son to get into remission but he did need to go onto a med after a couple months. It is fantastic but hard to stay on long term I would imagine.

 

[Farmwife]

Hi and welcome. My Grace was 3 at dx also.
EEN/EN is a way of life for us now.
We tried just EEN but it wasn't enough to keep her in remission so we've added medicine.
I would still encourage EEN as a substitute to prednisone if possible.
When we notice a small flare we cut back food and step up her formula. This gives her gut rest and time to heal.
We do this under her GI's advice. My daughter even had a feeding tube placed on her abdomen called a gtube.
It's worked well and we've avoided many steroid burst.