Kids on Enteral Nutrition

I suppose every GI does EEN and maintenance meds a little differently depending on the case. When my son was dx'd we were given the choice of Prednisone or EEN. We ended up going the Prednisone route, but had we chosen EEN, our GI would have put him on it for 3 mos with a NG tube, and no solid food. The maintenance med would have been started right away as it can take weeks/months for it to kick in. Imuran/aza takes about 3 months (I suppose 6mp is much the same), and those are often the first drugs of choice if your GI tends to use the "step-up" approach. My son was not able to tolerate Imuran, so we switched to Methotrexate injections, which kicks in a little sooner-around 6-8 weeks. Your GI may use a "top down" approach, starting with a biologic med, like Remicade or Humira. I do not have any experience with the biologics, but I believe they reach therapuetic levels rather quickly. Best of luck, and take care!

Typically you don't gain weight when it is just EEN no food .
The weight gain comes with supplemental en plus food .
As stated above you need to start maintence meds when pred or EEN is started
Imuran/Aza/6-mp take 3-6 months to start working .
Methotrexate 6-8 weeks
Remicade 6-8 weeks
Humira 3-4 months

If you wait then you are coming off EEN and the inflammation starts to build up again before the maintenance med can keep the system calm
Most maintence meds are not strong enough to reduce inflammation that is why pred or EEN is given .
So pred/EEN reduces inflammation you stop them a week or two after starting 6-mp
Inflammation comes back and you end to start pred/EEN again.

EEN is most effective the first time it is used after that it is less effective at reducing inflammation .

The good news is you have a dx
So you can ask your gi what the plan is , what is expected to happen and what you can expect plan b to be if that doesn't happen by day xyz .


Good luck

well after a visit to the gastric surgeon on thursday, it has been decided that surgery is the best path to take for my son harry. i am not allowing him to take steroids and the doc agrees that when these can be avoided all the better especially because my son has quite bad acne and steroids will almost always exaserbate his symptoms. he spent 8 weeks on modulen only and then food introduction. he also is on azathioprine. unfortunately all this to no avail. his surgery is booked for the end of the month at the latest but more than likely in the next fortnight. we are all abit nervous but excited at the same time as this is likely to bring great relief for what we hope to be an extended period of time all being well.
thanks all for listening. this site is invaluable for venting

What will they remove/do during the surgery?

hi pilgrim
They are removing a small part of his small bowel.

yay surgery booked for the 19th august. i may sound a little excited which is a bit surprising considering surgery is nothing to be excited about but finally seeing a light at the end of the tunnel and fingers crossed it may just give harry an extended period of relief from his crohns.
he is also relieved and is quite ready for whats to come