My 14 year old son has just been diagnosed with Crohn's and I am devastated. I am actually a very panicky person when it comes to illness of any sort and am struggling to process what this means in terms of my son's future. He has just begun enteral feeding and really struggled with the first glass do Modulan. My heart breaks at his courage and tenacity. We are very close and I know he picks up on my terrible anxiety. He has been trying to reassure me and tell me this is not so serious and he will be fine! He is such a sporty young boy, loves his soccer, tennis and surfing. A 6 week course of Moduran has been recommended to hopefully put him into remission. How can I help him to get through this. Thing is he is not that ill, besides for some intermittent diarrohea and slight constipation, he seems fine? Does the illness start off like this and is it a certainty that things will worsen? Please help!
Enteral - How do I help my son?
- Thread starter Robs a
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Help Support Crohn's Disease Forum:
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So sorry to hear about your son and that you had a need to seek out this forum but wanted to welcome you.
There is a thread on EN or enteral nutrition here on the forum that you may want to take a browse through. There are several parents that have used some form of EN and they will be by shortly I'm sure to tell you their experience and give some advice. I do know several of them had their children do EN by ng tube which the kids learned quickly how to insert themselves. Tesscorm can give you information about this and I believe her son did EN overnight while he was sleeping.
I would encourage you to browse through the Parents of Kids with IBD subforum as well, you can find it on the main page. There are alot of caring, compassionate parents there with great advice and information.
Good luck with the EN and I hope it puts your son into remission quickly. Have they mentioned what maintenance meds he will be on after the EN?
There is a thread on EN or enteral nutrition here on the forum that you may want to take a browse through. There are several parents that have used some form of EN and they will be by shortly I'm sure to tell you their experience and give some advice. I do know several of them had their children do EN by ng tube which the kids learned quickly how to insert themselves. Tesscorm can give you information about this and I believe her son did EN overnight while he was sleeping.
I would encourage you to browse through the Parents of Kids with IBD subforum as well, you can find it on the main page. There are alot of caring, compassionate parents there with great advice and information.
Good luck with the EN and I hope it puts your son into remission quickly. Have they mentioned what maintenance meds he will be on after the EN?
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I think it is great that your son is attempting EN, it didn't go well with my son's attempt and he was using for the most part polymeric supplemental drinks like Ensure and Boost. He couldn't stand the texture and it made him gag. He wasn't crazy about the taste either and from what I hear modulen tastes can taste worse although I think it is even more broken down for digestion. If it is needed again, C is getting the not negotiable rule, and I think we will opt for the ng tube too. EN has really great success rates at bringing down inflammation while being utilized so it is awesome that your son giving it a go!
I don't have any experience with AZA as C went straight to Remicade, but there are plenty of parents on here that have utilized Imuran(AZA)/6MP and they can give you their experience.
I don't have any experience with AZA as C went straight to Remicade, but there are plenty of parents on here that have utilized Imuran(AZA)/6MP and they can give you their experience.
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I'm so sorry that you had to find your way here because of your son's illness. It is certainly overwhelming to hear this sort of diagnosis but it truly does get easier to accept. 
As far as EN, as Clash mentioned, my son did exclusive EN (no other foods) for six weeks, last May-July (2011), when he was diagnosed. He did it through an NG (naso-gastric) tube (inserted it each evening and removed it in the morning). And, as challenging as that sounds, he learned how to do it very, very quickly (a couple of times with the nurse and then on his own after that). After the six weeks, he has continued with EN as a maintenance treatment (1/2 dose, 5 nights per week plus a regular diet added back). He continues to use the tube and it literally takes him seconds to insert. The benefits of using a tube is that there is no bother with drinking 'enough' formula each and every day and no worries about the flavour; the biggest negative, however, is that as all the formula is ingested overnight, there is some hunger during the day/evening. If you have any questions re the tube, just let me know.
But, regardless of the method, it's a great treatment option and it has kept my son in clinical remission (no symptoms) since last year and has reduced/controlled his inflammation TO A POINT... unfortunately, MREs do show some continued inflammation so, most likely, we will be facing medications soon.
As far as supporting him with Modulen, the challenges are a bit different from having the formula overnight... my son was allowed clear fluids, broth, jello, etc. during the 'exclusive' EN period, this helped him a bit. When feeling hungry, distraction helped. In my son's case, I didn't give him the 'final' date of the formula (until the very last week) as I thought it might be overwhelming to know there were 'still 5 weeks left', 'still 4 weeks left', etc. However, everyone's different and I know some parents have said it helped their kids to count down the days... Just a note, while I believe drinking the Modulen 'cold' is more tolerable/palatable, I have read that 'freezing' it into popsicles, etc. can cause the formula to lose some of its nutritional value.
I don't think anyone will be able to give you a definitive answer as to whether things will worsen. People respond differently to treatments, have different symptoms, react differently to diets, etc. Some have to try various treatment options to find the right one and others find their right treatments right away.
There is tons of information on this forum and lots of wonderful members who will share their knowledge! Ask questions!! And, have a look through the Enteral Nutrition and AZA treatment forums and the Supplements, Diet subforum.
Also, please come to the Parents of Kids with IBD forum (lots of of great, great parents who understand your worries and are always there to support you!).
Here is a link to the Kids' Success Stories thread... it may help to read of kids who have done well so far!
http://www.crohnsforum.com/showthread.php?t=27079
Good luck!! :ghug: Please let us know how your son is doing!!
As far as EN, as Clash mentioned, my son did exclusive EN (no other foods) for six weeks, last May-July (2011), when he was diagnosed. He did it through an NG (naso-gastric) tube (inserted it each evening and removed it in the morning). And, as challenging as that sounds, he learned how to do it very, very quickly (a couple of times with the nurse and then on his own after that). After the six weeks, he has continued with EN as a maintenance treatment (1/2 dose, 5 nights per week plus a regular diet added back). He continues to use the tube and it literally takes him seconds to insert. The benefits of using a tube is that there is no bother with drinking 'enough' formula each and every day and no worries about the flavour; the biggest negative, however, is that as all the formula is ingested overnight, there is some hunger during the day/evening. If you have any questions re the tube, just let me know.
But, regardless of the method, it's a great treatment option and it has kept my son in clinical remission (no symptoms) since last year and has reduced/controlled his inflammation TO A POINT... unfortunately, MREs do show some continued inflammation so, most likely, we will be facing medications soon.
As far as supporting him with Modulen, the challenges are a bit different from having the formula overnight... my son was allowed clear fluids, broth, jello, etc. during the 'exclusive' EN period, this helped him a bit. When feeling hungry, distraction helped. In my son's case, I didn't give him the 'final' date of the formula (until the very last week) as I thought it might be overwhelming to know there were 'still 5 weeks left', 'still 4 weeks left', etc. However, everyone's different and I know some parents have said it helped their kids to count down the days...
Just a note, while I believe drinking the Modulen 'cold' is more tolerable/palatable, I have read that 'freezing' it into popsicles, etc. can cause the formula to lose some of its nutritional value.I don't think anyone will be able to give you a definitive answer as to whether things will worsen. People respond differently to treatments, have different symptoms, react differently to diets, etc. Some have to try various treatment options to find the right one and others find their right treatments right away.
There is tons of information on this forum and lots of wonderful members who will share their knowledge! Ask questions!! And, have a look through the Enteral Nutrition and AZA treatment forums and the Supplements, Diet subforum.
Also, please come to the Parents of Kids with IBD forum (lots of of great, great parents who understand your worries and are always there to support you!).
Here is a link to the Kids' Success Stories thread... it may help to read of kids who have done well so far!
http://www.crohnsforum.com/showthread.php?t=27079
Good luck!! :ghug: Please let us know how your son is doing!!
David
Co-Founder
Hi Robs and welcome
I'm so sorry to hear about your son, that's terrible
The best advice I can give you is to connect with the other parents in our Parents of Kids with IBD section like Tesscorm suggested. They're truly an amazing group of people and very likely exactly what you need.
All my best to you.
I'm so sorry to hear about your son, that's terrible
The best advice I can give you is to connect with the other parents in our Parents of Kids with IBD section like Tesscorm suggested. They're truly an amazing group of people and very likely exactly what you need.
All my best to you.
Tesscorm thanx for your post. I enquirer about the naso gastric tube and for some reason they are opposed to this in my part of the world (or at least our nutritionist and doctors). My son is going to have to do is best to drink the shake, even tough he finds the taste and texture quite horrible.
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Good luck to him! Our kids are so much stronger than we realize, truly my son was also my 'rock' during the time after his diagnosis!
Just one more 'motivator', from my son's perspective :lol:, right or wrong, he believes that the formula has helped him 'bulk' up his muscles (important to a teen boy in sports!). He's found that he's able to build muscle quicker than his friends... he may not be wrong as the formula is so nutritionally balanced and so easily digested but, even if he's wrong... if it motivates him to continue with EN, there's nothing wrong with that! :thumright: (FYI, my son had lost approx. 20 lbs before being diagnosed, he gained back approx. 10 lbs during the six weeks exclusive period and then gained another 20 in the six weeks following that, once food was added back.)
Just one more 'motivator', from my son's perspective :lol:, right or wrong, he believes that the formula has helped him 'bulk' up his muscles (important to a teen boy in sports!
). He's found that he's able to build muscle quicker than his friends... he may not be wrong as the formula is so nutritionally balanced and so easily digested but, even if he's wrong... if it motivates him to continue with EN, there's nothing wrong with that! :thumright: (FYI, my son had lost approx. 20 lbs before being diagnosed, he gained back approx. 10 lbs during the six weeks exclusive period and then gained another 20 in the six weeks following that, once food was added back.)
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I am so sorry to hear about your son. I myself am 16 and I have Crohn's Disease. I was diagnosed right around my 7th birthday. I was actually in remission for many years until I got a really bad stomach virus a few months ago which caused me to have a relapse. I have been through nearly every treatment there is, and nothing really helped me, until my mom found a book called "Breaking the Vicious Cycle." I haven't been able read the other comments on here so I don't know if anyone posted about it already. It does not work for everyone, but in the book it talks about the Specific Carbohydrate Diet. It is basically just specific foods that can upset Crohn's Disease and worsen your symptoms. It can be very hard to follow any specific diet especially for Crohn's because many foods may be prohibited. For a few years I had to stay away from all grains, dairy, starch, and added sugars, but it put me in remission and I was not on any medication for 6 years. There is no specific diet that works for every person, you just have to experiment and see which foods seem to upset the symptoms. I am back on the diet completely again, and I am actually doing very well. Also, there is a diet called the Paleo diet, used by people in fitness, exercise, and nutrition, and there are many paleo recipes to make food very similar to the food eaten by those unaffected by the disease. I hope this made sense and helped. If you have any questions about it I'll be happy to answer and try to help in any way possible
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OOOHH Panicky, I was the same way when I heard the word "Crohns."I had no idea what it was or where it came from, so I'm with you on this. I also used to get scared and my son felt it and he worked (at 6) to keep me strong when it should have been the other way around.
I eventually found a way to become his strength, which in turn help him focus on getting better. I know it's hard but you can't be the one getting the inspiration and strength. You have to provide it to him. Seeing you scared and upset makes him stressed. And stress is a huge trigger.
I haven't personally tried the Enteral but I guess my son is actually doing on on a regular because of how I feed him. I wish I would have figured out to feed him calming foods a long time ago, we probably wouldn't have gotten in so deep.
If he is going through a flare up, it's best to have him intake the Enteral for a while.It keeps his intestines from having to work so hard to digest foods.
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Our 13 year old daughter was diagnosed in January of this year. She too looks healthy and beautiful. It is important for us moms to get informed, cry when you need to and support our children. My daughter reaches out to me more than anyone right now, so I stay strong for her. I have cried a lot on my own... which is part of the process of learning and dealing with the disease. I am learning and going through the process so I can be helpful as she faces the disease herself. At this age she just wants things to be as normal as possible and live her life.
Our daughter was very anemic and has had a lot of pain with her Crohns and missed a lot of school. We have a wonderful doctor who is treating her the best that she can. Our daughters Crohns is in her colon and has been moderate to severe. Currently her Crohns is mild and we just found out she has antibodies built up against Remicade. We are waiting to see what will be next. I think the best thing we did was eliminate milk products (lactose) from her diet.
Your son sounds amazing. You will both help each other through this. Maybe our children could message each other when they are ready. There are times our daughter feels alone and seems to be getting closer to reaching out to others. I have been looking for the right person for her to talk with that is close to her age. It is so good for them to know they are not alone.
My heart goes out to you and your son, and I hope to keep in contact with you.
take care
Julie
Our daughter was very anemic and has had a lot of pain with her Crohns and missed a lot of school. We have a wonderful doctor who is treating her the best that she can. Our daughters Crohns is in her colon and has been moderate to severe. Currently her Crohns is mild and we just found out she has antibodies built up against Remicade. We are waiting to see what will be next. I think the best thing we did was eliminate milk products (lactose) from her diet.
Your son sounds amazing. You will both help each other through this. Maybe our children could message each other when they are ready. There are times our daughter feels alone and seems to be getting closer to reaching out to others. I have been looking for the right person for her to talk with that is close to her age. It is so good for them to know they are not alone.
My heart goes out to you and your son, and I hope to keep in contact with you.
take care
Julie
Thanks everyone for encouraging messages. We are on day 5 of exclusive EN. My son actually managing very well indeed, once he was told by the nutritionist that he could add sa teaspoon of choc shake powder to the awful tasting Modulan, things changed. He has upped his shakes to 7 a day and we are all so proud of him. Perhaps someone might be able to answer my question re bowel movements while on EN. How often? He has only been once since he started EN but does not feel bloated or uncomfortable at all.
We have decided not to eat meals in front of him and are basically attempting to change the routine and associations with food. I think he prefers it this way, at least until he gets used to not eating real food! the journey continues!
We have decided not to eat meals in front of him and are basically attempting to change the routine and associations with food. I think he prefers it this way, at least until he gets used to not eating real food! the journey continues!
