My 11 year old son was diagnosed (via colonoscopy/ endoscopy) with moderate to severe Ileocolonic Crohn's in early December. In mid-December we started Exclusive Enteral Nutrition (orally) using Boost. He was diagnosed as we searched for reasons for lack of growth/ weight loss (we were trying to figure out if it was due to reduced intake from a palate expander or absorption). In the first two weeks, he did improve his nutritional profile (no longer anemic) but his inflammatory indicators are still elevated. After reviewing the research on kids and using exclusive enteral nutrition upon initial diagnosis, we thought this would be the best route to try for our son's long term growth.However, given the challenges, the jury is out on whether we will need to switch to NG tube feeding or steroids to bring him in to remission. Particularly challenging to launch this over the holidays, and has eliminated our family dinners. Will post some specific questions on Exclusive Enteral Nutrition that I will post in that forum. I am also interested in anyone who has experience with Neurofibromatosis1 (NF1) and Crohns, particularly as it relates to types of meds to avoid (doubling up on certain risks, e.g.) or any other issues. My son is dealing reasonably well with the challenges of drinking all day and drinking in school. However, he has chosen not to tell his friends. If asked what he is drinking he just says "protein shake." I think that he would feel better if he opened up, but I am being respectful of his approach.
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Son Almost 12th w/Ileocolonic Crohns, Exclusive Enteral Nutrition
- Thread starter NewbieMom
- Start date
DustyKat
Super Moderator
Hi NewbieMom and :welcome:
I'm so sorry to hear about your son...:hug:
I'm glad you have found your way here Mum.
I know you have found the EN forum so you will find a wealth of information there. I'm sure Tesscorm will be along, she has a son that has been on EN for quite a while now and is a wealth of information. We also have a couple of adults that I can think of off the top of my head that have a lot to do with EN as well...happy & littlemissh. You will find responses from them in threads in the EN forum.
Research does indicate that, for children in particular, EN is as successful as Prednisone in inducing remission but I think the jury is still out on the longer term success of it it maintaining remission.
I can't say that I have read on here of anyone else having NF1 along with their Crohn's and a search doesn't bring up anything either. Do have any thoughts on what meds you might think are risky? Do you think the biologics and immunosuppressives may be contraindicated?
I'm sorry I can't be of more help. Good luck and I hope your boy receives finds relief and remission very soon!
Oh, and we have a parent's forum here too, so pop by, we'd love to see you there!...
http://www.crohnsforum.com/forumdisplay.php?f=49
Dusty. xxx
I'm so sorry to hear about your son...:hug:
I'm glad you have found your way here Mum.
I know you have found the EN forum so you will find a wealth of information there. I'm sure Tesscorm will be along, she has a son that has been on EN for quite a while now and is a wealth of information. We also have a couple of adults that I can think of off the top of my head that have a lot to do with EN as well...happy & littlemissh. You will find responses from them in threads in the EN forum. Research does indicate that, for children in particular, EN is as successful as Prednisone in inducing remission but I think the jury is still out on the longer term success of it it maintaining remission.
I can't say that I have read on here of anyone else having NF1 along with their Crohn's and a search doesn't bring up anything either.
Do have any thoughts on what meds you might think are risky? Do you think the biologics and immunosuppressives may be contraindicated? I'm sorry I can't be of more help. Good luck and I hope your boy receives finds relief and remission very soon!
Oh, and we have a parent's forum here too, so pop by, we'd love to see you there!...
http://www.crohnsforum.com/forumdisplay.php?f=49
Dusty. xxx
Vitamin/ Mineral Levels
I am not sure on that - thanks for raising it. Hasn't been shared with me - just "nutritional profile is fine". I am actually thinking of working with a naturopath in addition to our medical doctor) as I think they may be better focused on looking at the deatils of nutrients and vitamins.
I do like the dietitian, but our focus with her thus far has been the enteral nutrition.
We have only had blood checked twice (once the week before Thanksgiving, before I was referred to the G.I.), and then last week (2+ weeks into the enteral nutrition and post colonoscopy/ endoscopy). We have a visit again in 2 weeks.
I am not sure on that - thanks for raising it. Hasn't been shared with me - just "nutritional profile is fine". I am actually thinking of working with a naturopath in addition to our medical doctor) as I think they may be better focused on looking at the deatils of nutrients and vitamins.
I do like the dietitian, but our focus with her thus far has been the enteral nutrition.
We have only had blood checked twice (once the week before Thanksgiving, before I was referred to the G.I.), and then last week (2+ weeks into the enteral nutrition and post colonoscopy/ endoscopy). We have a visit again in 2 weeks.
xJillx
Your Story Forum Monitor
Hi NewbieMom and welcome! I am so sorry to hear about your son's recent diagnosis. I am glad there has been some improvement while taking Exclusive Enteral Nutrition, but I wish it had a greater impact.
Perhaps remission can be achieved when combined with a round of steroids. And being that your son's Crohn's is located in his ileum, he could take Entocort instead of prednisone, which causes a lot less side effects as it is localized to that region and little is absorbed in the blood stream.
Crohn's is not easy to deal with, but I am glad your son is handling all of this so well. And he is very clever for just saying he is taking protein shakes. I am sure once he is ready, he'll be more open. But I don't see any harm in him keeping things quiet for the time being. As long as he knows he can be open at home, which I am sure he does, that is all that matters.
Once again, welcome to the forum. I am sure you will find it very helpful. And I sure hope your son will feel better soon.
Perhaps remission can be achieved when combined with a round of steroids. And being that your son's Crohn's is located in his ileum, he could take Entocort instead of prednisone, which causes a lot less side effects as it is localized to that region and little is absorbed in the blood stream.
Crohn's is not easy to deal with, but I am glad your son is handling all of this so well. And he is very clever for just saying he is taking protein shakes. I am sure once he is ready, he'll be more open. But I don't see any harm in him keeping things quiet for the time being. As long as he knows he can be open at home, which I am sure he does, that is all that matters.
Once again, welcome to the forum. I am sure you will find it very helpful. And I sure hope your son will feel better soon.
Hi Newbiemom,
I don't have experience with NF Type 1 and Crohns but I do have a daughter with crohns and another daughter with NF Type 1, diagnosed last year. Welcome to the forum. This is a great place for advice.
I don't have experience with NF Type 1 and Crohns but I do have a daughter with crohns and another daughter with NF Type 1, diagnosed last year. Welcome to the forum. This is a great place for advice.
Hi,
I'm sorry your son is not well! But you will find much support and friendship here. There are many, many knowledgeable members who are always ready to share their experiences; as well the Parents forum has helped me immensely as we all understand the pain and frustrations of when your child is ill.
As Dusty mentioned my son has been using EN as treatment for his Crohns since May (he uses an Ng tube). The first six weeks was formula only, since then, his maintenance treatment he ingests half the dose, 5 nites per week (and eats a regular diet). His only other medication is nexium (antacid); his supplements are calcium, vit D and krill oil. So far, it seems to be working, however, he has had some minor symptoms and, a recent test I requested, showed his inflammation markers are up a bit (am waiting to speak to his GI as I requested this test at a walk-in clinic). EN has good success at attaining remission but is not as successful at maintaining remission as other meds.
Also, is the Boost your son is drinking made for EN therapy? I don't believe that the regular nutritional supplement shakes have the same formulation as exclusive EN formulas??? My son is using Tolorex (by Nestle).
Please let me know if you have any questions, I'm happy to share what experience I have with EN.
Good luck!
I'm sorry your son is not well! But you will find much support and friendship here. There are many, many knowledgeable members who are always ready to share their experiences; as well the Parents forum has helped me immensely as we all understand the pain and frustrations of when your child is ill.
As Dusty mentioned my son has been using EN as treatment for his Crohns since May (he uses an Ng tube). The first six weeks was formula only, since then, his maintenance treatment he ingests half the dose, 5 nites per week (and eats a regular diet). His only other medication is nexium (antacid); his supplements are calcium, vit D and krill oil. So far, it seems to be working, however, he has had some minor symptoms and, a recent test I requested, showed his inflammation markers are up a bit (am waiting to speak to his GI as I requested this test at a walk-in clinic). EN has good success at attaining remission but is not as successful at maintaining remission as other meds.
Also, is the Boost your son is drinking made for EN therapy? I don't believe that the regular nutritional supplement shakes have the same formulation as exclusive EN formulas??? My son is using Tolorex (by Nestle).
Please let me know if you have any questions, I'm happy to share what experience I have with EN.
Good luck!
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We used Pediasure Peptide when we tried EN. The nurse said Over the counter supplements such as Boost are not the same as prescription supplements. She said they are the same as eating because the proteins they contain are not broken down the way the ones in the prescript formulas are.
Thank you Tesscom and Kimmidwife. I know originally it was thought that only the elemental formulas brought benefits. There are studies more recently we were told that the polymeric formulas are equally effective as the elemental formulas, so Boost was suggested to us for the palatability issues. That said, I think a more elemental formula might be easier for him, but for the taste issues. (Picky, chocolate only)> We have tried to intersperse some Nutren this past weekend, but it only comes in vanilla, and when you flavor it with chocolate syrup (as allowed by our dietitian) the vanilla flavor doesn't go away (a bad thing for a vanilla hater). I mixed up some vanilla Peptamen with chocolate syrup (more elemental than Nutren) but didn't offer it to him as he was having a tough day. I have read in one of the forums that some people are using VivonexPlus (unflavored powder). Maybe that could help us. So bottom line, despite the research, would like to try a more "basic" formula, but need him to drink it. He has ulcers in his esophagus, so am less excited about NG tube....
NewbiMom,
I think the pedicure peptide may come in chocolate. I know it does come in vanilla and you can mix in chocolate nesquik powder. I also put it in the blender with ice to make it more like a milkshake.
I think the pedicure peptide may come in chocolate. I know it does come in vanilla and you can mix in chocolate nesquik powder. I also put it in the blender with ice to make it more like a milkshake.
Welcome Newbie Mom,
My son is 11 also and was diagnosed in October. His main issues were growth and weight as well so we struggled with the decision about Prednisone vs. EN. My Dr. pushed Prednisone because the remission tends to last longer than with EN. He said Johnny's growth would not be affected by short term prednisone (2.5 months). He is off it now and doing very well. My husband and I decided that if Prednisone was needed again soon we would go the EN route if we felt like the usage was becoming chronic. For us it was right because Johnny was barely eating anything at diagnosis and this sounds strange but I wanted him to learn to eat again. The prednisone worked quickly, gave him a huge appetite and he was able to eat almost whatever he wanted. I guess I will never know what would have happened if we would have gone the other route. But know that Prednisone can be a positive experience if you choose it at some point.
Also, my son decided to tell his friends. Honestly, none of them knew what it was and just kind took it in stride. I think they will learn what the disease is from Johnny and because he is doing well they don't think it is really that big of a deal. But we did let him make his own decision about it.
I am here if you have any questions Keep me updated about how EN works for your son, we might be trying it at some point.
My son is 11 also and was diagnosed in October. His main issues were growth and weight as well so we struggled with the decision about Prednisone vs. EN. My Dr. pushed Prednisone because the remission tends to last longer than with EN. He said Johnny's growth would not be affected by short term prednisone (2.5 months). He is off it now and doing very well. My husband and I decided that if Prednisone was needed again soon we would go the EN route if we felt like the usage was becoming chronic. For us it was right because Johnny was barely eating anything at diagnosis and this sounds strange but I wanted him to learn to eat again. The prednisone worked quickly, gave him a huge appetite and he was able to eat almost whatever he wanted. I guess I will never know what would have happened if we would have gone the other route. But know that Prednisone can be a positive experience if you choose it at some point.
Also, my son decided to tell his friends. Honestly, none of them knew what it was and just kind took it in stride. I think they will learn what the disease is from Johnny and because he is doing well they don't think it is really that big of a deal. But we did let him make his own decision about it.
I am here if you have any questions
Keep me updated about how EN works for your son, we might be trying it at some point.Hi,
Welcome to the forum! I am so sorry to hear that your son is not feeling well. I believe the reason why you may not have had as much success with the liquid diet is what you are feeding him. Boost is full of sugar and is not elemental. You mentioned that you are looking for a chocolate elemental drink. There is one made by Nestle called Peptamen Junior in chocolate flavor. It is a complete peptide based elemental drink designed for children 1 through 10 years of age. You will also find this available for adults and also Peptamen 1.5 which has more calories if he is underweight. My child has sipped on these drinks throughout the day, without an NG tube at times. Let us know how it goes!!
Welcome to the forum! I am so sorry to hear that your son is not feeling well. I believe the reason why you may not have had as much success with the liquid diet is what you are feeding him. Boost is full of sugar and is not elemental. You mentioned that you are looking for a chocolate elemental drink. There is one made by Nestle called Peptamen Junior in chocolate flavor. It is a complete peptide based elemental drink designed for children 1 through 10 years of age. You will also find this available for adults and also Peptamen 1.5 which has more calories if he is underweight. My child has sipped on these drinks throughout the day, without an NG tube at times. Let us know how it goes!!