Hello my 4 year old son has been diagnosed with Crohn's we've been on Pentasa, Sulfalizine, Cortifoam, Rowasa, and are back on Pred. This is our 4th month since diagnosis and we have not been in remission once. We had a second opinion today at CHOP and they suggested enteral feedings prior to bumping up to methotrexate. My son has not tolerated any other these meds very well, especially Flagyl. I was just curious if anyone has tried this method of treatment and how well did your child adjust to it. I am very concerned about him adjusting especially if we have to wind up using an NG Tube. Any thoughts? It would be nice to experience some sort of remission.
Enteral Feedings...
- Thread starter Jfarrelly
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Hi there. Im so sorry to hear about your baby boy. I wouldn't wish this on anyone, much less a baby/child. I wasn't diagnosed until I was 26. I guess I really don't have much advice for you except to say that being in remission can take months, usually years. I would just urge you to be as patient as possible, I can't imagine how hard that is for you, as a mother. I'm just thinking that because of his young age, maybe that could be a positive aspect in that he is resilient and will take to a drug soon. It definitely takes time and unfortunately it's trial and error with these drugs. But I'm quite sure you all will find one that works for him 
I wish you and your family the best of luck, you will definitely be in my thoughts and prayers.
2
I wish you and your family the best of luck, you will definitely be in my thoughts and prayers. 2
crohnsinct
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Hi and welcome but sorry you had to find us. Poor little pumpkin!
My daughter did Exclusive Enteral Nutrition to help her achieve remission when we were 4 months out from dx and Remicade still wasn't working on it's own. She was a lot older though (13). She was deathly afraid of the NG tube and that was all the motivation she needed to choke down about 10 shakes a day. However, she had the more palatable Boost and Ensure shakes. There are a bunch of suggestions to help get them down.....super cold...cup or can with small opening so they don't smell them...suck through a straw etc. There is a parents of kids on EN thread that might be good to check out. Even if you do have to go to the tube though many parents here and their kids love it and say it is much less of an issue than they initially thought. EEN along with the Remicade got my daughter to remission in 8 weeks and there she has stayed for over a year!
One thing to remember though is while EEN helps get a child to remission a maintenance med is still needed so you probably will not be able to drop other meds. They just might work a lot better once the EEN gets him to remission.
Good luck and I am sure the tube moms will be along shortly to help you.
My daughter did Exclusive Enteral Nutrition to help her achieve remission when we were 4 months out from dx and Remicade still wasn't working on it's own. She was a lot older though (13). She was deathly afraid of the NG tube and that was all the motivation she needed to choke down about 10 shakes a day. However, she had the more palatable Boost and Ensure shakes. There are a bunch of suggestions to help get them down.....super cold...cup or can with small opening so they don't smell them...suck through a straw etc. There is a parents of kids on EN thread that might be good to check out. Even if you do have to go to the tube though many parents here and their kids love it and say it is much less of an issue than they initially thought. EEN along with the Remicade got my daughter to remission in 8 weeks and there she has stayed for over a year!
One thing to remember though is while EEN helps get a child to remission a maintenance med is still needed so you probably will not be able to drop other meds. They just might work a lot better once the EEN gets him to remission.
Good luck and I am sure the tube moms will be along shortly to help you.
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WE did Exclusive enteral nutrition for my son when he was 7. he drank peptamin jr ( all oral no tube) for 9 weeks.
more later...
read this
http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf
more later...
read this
http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf
Welcome to the forum, but I'm so sorry to hear about your little guy. My 8 yr old son was dx'd in March, and we think he is now in remission. At dx, we were given 2 treatment options: prednisone for 3 mos, or EEN via NG tube for 3 mos. We chose prednisone, and Imuran (aza) was started as a maintenance med. My son had a bad reaction to the Imuran, so that set us back a bit and he ended up being on prednisone til Aug. He is doing well now on methotrexate for maintenance.
Our GI would have preferred us to go the EEN/NG tube route, and if my son was a few yrs younger, or older, I think we would have. EEN is very good at achieving remission and there are no drug side affects.
All the best to you as you make this decision. Take care!
Our GI would have preferred us to go the EEN/NG tube route, and if my son was a few yrs younger, or older, I think we would have. EEN is very good at achieving remission and there are no drug side affects.
All the best to you as you make this decision. Take care!
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Welcome to the forum, my son is 14 and we just finished week 3 of EEN, 3 more to go. It is working very well to control his current flare but it is hard to get him to drink 8 of them a day. He is drinking Peptide. You have to be pretty vigilant about a schedule. I'm thinking the NG tube may have been easier in regards to making sure he gets the right amount everyday.
He actually chose to do EEN over prednisone this time and has gone to friends house and done all the things he normally does we just pack/keep a cooler of shakes with us or in the car when we go places.
He actually chose to do EEN over prednisone this time and has gone to friends house and done all the things he normally does we just pack/keep a cooler of shakes with us or in the car when we go places.
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My son was much older, almost 17, but he did six weeks of EEN through NG tube. He was able to learn to insert the tube each evening and remove it during the day. He ingested all his formula overnight, while sleeping. While doing it this way eliminated to effort to drink multiple shakes each day, etc., it did mean he struggled with hunger by 'dinner' time. During the day he was allowed only clear fluids, broth, jello, freezies. Although challenging, it did work very well for him and quickly eliminated his symptoms.
Here is a link to the Kids on EN thread Crohnsinct mentioned:
http://www.crohnsforum.com/showthread.php?t=36345
And another link to the Enteral Nutrition section under Treatments:
http://www.crohnsforum.com/forumdisplay.php?f=161
I very much believe it's a treatment worth trying - it will provide your son with necessary nutrition, has comparable success rates as steroids and has no side effects. But, it is a challenging treatment, whether done orally or thru NG tube.
I believe Farmwife's daughter does a combination of oral and tube ingestion.
Good luck - I hope this helps your little boy.
:ghug:
Here is a link to the Kids on EN thread Crohnsinct mentioned:
http://www.crohnsforum.com/showthread.php?t=36345
And another link to the Enteral Nutrition section under Treatments:
http://www.crohnsforum.com/forumdisplay.php?f=161
I very much believe it's a treatment worth trying - it will provide your son with necessary nutrition, has comparable success rates as steroids and has no side effects. But, it is a challenging treatment, whether done orally or thru NG tube.
I believe Farmwife's daughter does a combination of oral and tube ingestion.
Good luck - I hope this helps your little boy.
:ghug:
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my son did it at 12 - drank 8 shakes a day for 8 weeks and we have just done it again aged 14 fir 6 weeks so far. made a huge difference esp this time as has been on meds for 2 years and the shakes we hope are tipping him into remission. tough and it needs a tough and determined kid. good luck
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Hi, my son did 8 weeks of Modulen via the NG tube. He didn't like the feeling for the first couple days but after that he didn't notice it at all. The EN really worked well for us and gave my son a good few months symptom free and now with the meds he maintains quite well.
My son did EEN for 6 weeks via a NG tube that he inserted himself nightly, he was 10 years old at the time. Much to my surprise my son had no problem at all with the NG tube. He literally learned how to insert the tube himself in a 1 hour teaching session with the GI nurse and within about 5 days he could do it in 12 seconds flat (he made me time him). My son did not find the tube bothersome at all once it was in. For us the tube was MUCH easier than drinking the shakes would have been (my son is a very picky eater).
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