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Enteral Nutrition

Hi Tesscorm,

The EN put her in remission for about 4 years. She stopped the EN after 2 years, and just drank the cans of Peptamen orally to supplement her diet - and still stayed well for 2years after that. She eventually flared again, and was put on Remicade. She is older now, and although she does not do the EN like she did when she was a teenager, she does drink the dilluted Peptamen 1.5 when she has flare ups. I sometimes wonder if we should do the EN again.

I agree with all of you - I just cannot for the life of me understand why these doctors in the States would give our children all these toxic meds, before at least trying something non-toxic like EN, which has no side effects. If it can turn around someone who was as sick as my child was, then it could help anyone. If it were their children, I wonder what their 1st choice of treatment would be. I guess they live and die by their medical journals and sometimes have tunnel vision. It is always so refreshing to meet a doctor who "thinks outside the box" and puts down all the medical literature and thinks about a situation logically. It saddens me to think of how many parents there are out there, going through what I did, and no-one is even mentioning this form of treatment and its success.
 
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So glad to hear your story, Kelly2!
Kim...is Caitlyn's weight suffering? I know that we will need our tube replaced in two more weeks (yup, thinking about it already) and while day-to-day is going well, tube placement was AWFUL and I am already weighing (lol) pros and cons. Izzi's weight is now stable and her stools are urgent but more regular and a bit less frequent (if that makes sense...less mucous, closer to being formed) so I *think* it is helping.)
I wish you wisdom for your decision...I know I hate making them! (hugs)
 
Hi Everyone,
Kelly2 How long was your daughter on exclusive formula before she started adding food back in? I am trying to convince Caitlyn that it will not work unless she just does the formula.
Angie,
Her weight is not an issue. If anything we have the oppisote problem She gained a ton of weight from the steroids.
Tesscorm, I know you all are right I just need to convince her. I really don't want her on those toxic meds.
 

Tesscorm

Moderator
Staff member
I sometimes wonder if we should do the EN again.

So, your daughter never tried the exclusive EN again? I've often wondered about that... whenever my son has a second flare, if going on the exclusive EN again would be as successful as the first time?

I've read stories where people have used the formula for short periods when flaring to increase their nutrition/calories but, I don't think I've ever read of someone who has used the treatment a second time to induce remission.
 
Tesscorm,
The program that Dr. John Hunter suggests is EN to induce remission followed by a LOFFLEX diet or full elimination diet to remain in remission. He suggests that if people relapse, they resume EN until they reach remission again and then resume the diet. His treatment is meant to be a lifestyle change, in that some people might not be able to tolerate certain foods. He suggests that the full elimination diet part of the treatment will take about a year to complete and that any foods that are not tolerated be retested periodically after that. He does state that a person's diet should be checked to make sure that it is nutritiously complete without the untolerated foods.

So yes, he expects that people might need to be on EN periodically for a short time to settle symptoms if they eat something that they cannot tolerate while they are working through the elimination diet. After that he states that people can use EN for a short time during times that they absolutely want to be well (weddings, grads, special vacations, etc.). As well, throughout their lives people might relapse and could resume EN as a treatment. He does state that people do get to a point where as long as they stick to their tolerable foods they remain well.

Info about his website and book are listed earlier on this thread. Also, I just wanted to state that the diet is meant to work on the same principle as the EN in that the EN has changed the flora of the bowel and the diet is meant to help maintain this change.

On a personal note I did achieve remission earlier this year on EN (documented with scopes and tests) but then relapsed on the LOFFLEX diet. I resumed EN and achieved remission again after only two weeks which I have maintained on the full elimination diet for three months.

Hope this gives you some more info.
 
The whole point of EN or Elemental/Modulen/etc is to rest the bowel. Drinks like Elemental 028 and modulen are formulated to be absorbed in the first few inches of the small intestine. Drink it too quickly, and you overwhelm the bowel and it pushes the liquid through faster and doesn't get absorbed where it should.
Eat anything and you miss the point. It'll have residue that wont be absorbed so your bowel now has food in it again. And it may be something that it really does not like. Let alone consider that some of the benefit is thought to be that bacteria in the lower bowels are starved of nutrition and so over time there are less of them - some peoples symptoms may be triggered by bacterial overgrowth.

So if you are on EN or Elemental type feeding, don't 'cheat' don't eat something, until you are properly ready, or you are back to square one.
 

Tesscorm

Moderator
Staff member
Thanks Happy,

Thanks for the info. It's something I will keep in mind for when he's a bit older. Hopefully, I will not need to deal with this anytime soon! Realistically, I know that Stephen would not be able to follow either diet plan now. Even at his age, 17, he is still such a picky eater when introducing new foods (in his case, fruits and veggies have always and continue to be a constant battle), that trying to build a truly healthy diet while eliminating unhealthy foods would be an unsuccessful nightmare.

He was able to do the six weeks exclusive EN because the discipline required was to NOT eat but, if he had had to drink the formula (rather than ingest through NG), it would have been much, much harder for him and it wouldn't have surprised me if he hadn't lasted the six weeks.

If/when he flares, unless circumstances don't allow it, I will push for Stephen do the six week exclusive EN again and pray that it works again for him too!

Good luck with the elimination diet! I really hope it continues to work for you and your remission continues!!!
 
Tesscorm,
Thank you for your good wishes. I hope that all of the children and teenagers on this thread do well on their EN, achieve remission, and find a way to keep in remission.

Parents, give yourselves a pat on the back for all of your hard work in helping your child with this form of treatment. It is not an easy thing to do. I was only accountable to myself when I was on EN.

When my son was ill as a child, he needed a medication that had to be mixed and consumed 20 minutes before eating, three times every day, for a year. This was extremely difficult as he was a very picky eater who loved sports (lots of travelling), and whenever we mucked up, his symptoms returned. Boy did we feel awful anytime that happened. However, that was a relatively simple treatment compared to EN via NG tube. So kudos to all of you for sticking with your child's treatment. :applause:
 
Kimmidwife - you asked how long my daughter waited until she ate again. I had no guidelines from any doctors back then, and just did what I thought was best. I remember that in the beginning, I turned the rate down VERY slow on the pump. Then I would steadily increase it. If I noticed that she had a runny tummy, I would turn down the rate again, and steadily increase it once more. She did not eat any food for a good few weeks as she was so sick, she had no appetite at all. After a few weeks, she started sipping pedriatric elemental drinks during the day, and then she started to eat pretty much anything she wanted within reason (no dairy/spicy foods and mostly chicken, turkey and fish). I found that as long as the bulk of her diet came from the tube feeding at night, she remained well. Over the course of time, she eventually stopped putting down an NG tube every night, and chose to just drink the Peptamen 1.5 instead. It still worked for years. Also, I wanted to mention that we did go back to the EN from time to time - whether by tube, or just drinking the dilluted formula very slowly, and it always worked. Something I wanted to share that I think is very important, is that if you ever want to try the EN, to make sure they use the correct tube as it can make a huge difference in the comfort of placing them. The tube I used was made by Kendall, and was called an 8 inch French tube. So tiny and flexible - no wider than the inside tube of a pen.

I am so grateful that we all get to share in our knowledge and experiences like we do. I know after all the research I have done over the last 15 years, I am quite a challenge when I meet with the doctors to discuss test results or course of treatments. Knowledge is power and I'm happy that we have each other to share this with:)
 
So Kelly2,
Do you think if she can get through about 3-4 weeks on the formula exclusivey then maybe we can start to slowly add food back in? I have been letting her have the clear liquids and also mashed potatoes becuase I read that mashed potatoes actually have antiinflammatory properties and are very good for people with stomach and intestinal ailments. Plus they are supposed to be one of the easiest foods to digest. She has been having bad pain for the past 2 days and we are getting her set up for an MRI to take a look becuase the pain is not in her usual spot it is actually on the left side and this has been going on for about 1 month now.
 
Hi Kimmidwife,

I just replied to your question, and then lost the whole post!! It just disappeared because I am not allowed to post URLs yet!! So here goes again:)

The million dollar question is what to feed our kids while they are flaring! For as many times as we read that a certain food is good for them, there are just as many who say it is bad. Then you throw into the mix, how different everyone responds and can tolerate certain foods, makes it even more frustrating. However, I would not feed Caitlyn mashed potatoes. I would try and avoid feeding her specific carbohydrates that are not digested easily in people with ibd. It results in fermentation and overgrowth of bacteria, which causes inflammation and damage to the intestine in someone with ibd.

Although over the last 15 years, I have researched the effects of nutrition on ibd, I think we need to carefully consider the results of the biochemist, Elaine Gottschall's 4 year research into the subject. I have never tried the scd diet, but if Caitlyn does not want to try the NG tube feedings, perhaps suggest the scd diet to her. Instead of mash pototoes, try feeding her scrambled eggs for breakfast, and homemade chicken soup for lunch (I use organic broth), or you could do a whole chicken in the slow cooker which makes it super tender and moist.

Ideally, she would want to do the exclusive NG tube feedings for at least 3 - 4 weeks, and then slowly re-introduce foods, according to her symptoms. You have to start slowly with the NG tube feedings, or the scd diet. It is not recommended that you rush through either process. I set the pump on very slow in the beginning, and over the course of a few days, depending on her symptoms, I slowly increased the rate. I don't think she could do this by drinking the formula orally.

Until you start the EN, why don't you consider giving the scd diet a try. Here is a link for people who would like to start the diet, but have not yet bought the book, Breaking the vicious cycle:

Sorry it won't let me post the link - you will have to look it up, or maybe someone else can post it for you.


You mentioned that Caitlyn likes to bake, in time she could try the cake recipes found on scdrecipe.com - they all sound delicious! Maybe one day she could open a shop which has a section that specially caters to ibs/ibd/celiac:)

Please let me know if you have any other questions, or if I can help in any way. (And remember that we are making great strides in research these days!)
 
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Kelly2,
Thanks for the advice. It's been a rough night Caitlyn was crying that her stomach hurt and she can't stand doing the EN anymore. I disucssed with her adding a few foods from the SCD and still staying on the en and seeing if that would work. Her Father put his foot down with her and insisted she listen to us and try it this way. I understand how hard it is for her, but we really just want to help her. I told her bout SCD and not eating potatoes. (she was only having a tiny amount once a day) We looked over the website on SCd. We decided to continue her with the clears, the formula, and add in eggs which according to SCD are okay. so we made her clear broth with an egg in it (kind of like chinese egg drop soup) It hurt her stomach but everything she's been eating (even the formula) has been causing her pain. we have an MRI sheduled for next Thursday. Hopefully it will show what is going on on the left side which is where she is having most of her pain now.
 

David

Co-Founder
Location
Naples, Florida
Thanks for sharing all the info Kelly. You should be able to post links now. Sorry for the issue, it's a tool we use to stop spammers but unfortunately sometimes affects good members too :(
 
Hi Kimmidwife,
I was thinking about you today, but was so rushed off my feet, i did not have time to correspond. How was Caitlyn today? Does she enjoy drinking the elemental drinks, or is it something she has to force herself to do? Was just thinking that perhaps a G tube might suit her better if she can't stand the idea of an Ng tube. I think you are doing the right thing in trying to at least get the majority of her nutrition from EN. Pain in the lower left side of your abdomen would normally indicate something like diverticulitis but in IBD would more than likely indicate an area of inflammation or narrowing. I hope it resolves itself through the EN you are doing.

David thanks for explaining why I could not post my message - makes sense now:)
 
Hi Kelly2,
Caitlyn does indeed have to force herself to have to drink the shakes she hates them. I asked the doctor about a G tube he said in Crohn's it can cause issues and they try to avoid using them. She refuses to try the NG tube. Last night she had a bad night again crying that she can't take it. So we have decided to continue the EN but allow her to eat the foods approved on the SCD. She had some egg and a little boiled chicken. She felt a little better just being able to eat a little. She is in a much better mood today. She did have pain after eating. She also has not been drinking her formula so has not been consuming enough calories which I think was one reason she was so irritable yesterday. I am not worried about her losing weight she gained 10 pounds from the steroids and she was at her ideal weight prior to them. I just want her to feel good and be happy and get healthy.
 
Our formula is covered (I *think* the receipt said it was some ridiculous amount, like $2000) with a $35 copay. We did have a script.
 
Hi Kimmidwife,

I feel so bad for Caitlyn (and you!) having been in this predicament myself. I think you are doing the best you can, and that is all you can do! I am so sorry that she has had a tough time with the EN. You know my child would not do the SCD diet! I just want you to know that I don't necessarily agree with what her doctor said about the gtube. They have done a number of studies on the effects of gastrostomy for crohns and concluded that it was safe - here is one of the studies.

http://www.ncbi.nlm.nih.gov/pubmed/9177515

Another study concluded:

CONCLUSION:

Nutritional therapy is important in the management of children with growth failure due to Crohn's disease, though it may not be the only factor affecting growth. G-tubes are safe and well tolerated by children with Crohn's disease and should be offered to those children who do not tolerate prolonged use of an NG-tube.


I just wanted you to know this in case one day, you really needed another treatment option. How many Remicade infusions did she have before she failed the therapy? Did they do lab work to see if she made antibodies againt the Remicade?

Is she still having the lower left abdominal pain? Its a pity they could not get her in earlier for her test to determine what is causing this!
 
kim, I just wanted to mention that I have noticed a MARKED difference in Izzi when she ingests food. Her dad will offer her meals so she tends to eat often when she is with him and she does far worse on those nights (up 5-8 x a night) than she does on the days that I have her (I eat when she is otherwise occupied and never offer her food, although if she asks I will usually allow her something [she rarely asks]).
 
Hi Kelly2,
Thanks for the info on the G tube if we end up needing it I will definitly now have proof to bring the doctor. She is having a lot of stomach pain especially on that left side and at other times it is everywhere. Today was a bad pain day she said.
Izzi,
SHe is having a very hard time with the not eating so I am letting her eat foods that are okay on the SCD. Basically plain chicken, eggs, and beef.
I also read about this other diet called the paleo diet or the caveman diet which seems to be pretty similar to the SCD.
 
Hey Kim,

Was thinking about you guys today and wondering how everything went with the MRI? Do you have to wait to see the doctor again to get the results?

Kelly
 
I hope so too. I also spoke with the doctors about the Remicade and checking the antibodies. He was going to check with our insurance and if they cover it will run the test. They drew the blood at her MRI appt when she had her regular blood work done. Caitlyn said they had a different contrast at the MRI today and it tasted a little worse then usual. She also said the IV contrast made her stomach hurt. Tonight she is feeling very nauseas. I am hoping she will be able to go to school tomorrow.
 
Thanks for the update. I sure do hope that you hear back before the weekend - its always frustrating when the weekend comes, and no news and then you have to wait until the following week. I'm so glad to hear that you are having the lab work done to see if Caitlyn has built up antibodies against the Remicade. Without insurance, the cost would be $225 from Prometheus. It really would be a shame to cross Remicade off the list, if it isnt necessary, as it has healed and kept so many others in remission. My daughter was on and off of Remicade for well over 10 years and it really pulled her out of some serious flare ups. In fact, she was one of the 1st pedriatric patients to test drive it back in the day. I sure do hope that Caitlyn feels much better tomorrow.
 

Tesscorm

Moderator
Staff member
Hope Caitlyn's feeling better. Stephen had an MRE on Monday and felt unwell all evening - nausea, cramps, D, etc. He started to feel a bit better by late evening and was fine by Tuesday morning. Hopefully, Caitlyn's better now too. :rosette2:
 
Hi Tesscorm,
Caitlyn is still feeling nauseas and her tummy is hurting as well. She is also feeling very dizzy. Is an MRE the same as an MRI?
ALso does anyone know if quinoa is allowed on the SCD? I am trying to get a good list of the foods allowed. I am trying to avoid buying the book as I bought the other book beat crohn's with EN just a month ago and am trying not to spend to much money right now.
 
Ben Update

Well we tried hard for 2 years to stick to EN as primary crohn's treatment...for now 8 year old Ben. but, alas, it has ultimately failed to keep him in remission. Ben was just not tolerating 100% of calories via his g-tube at night, nausea & vomiting episodes every week, so, he was re-scoped and did a pill cam study which shows severe inflammation all over small bowel. BTW - pill cam is still stuck almost 2 weeks later, another thread?

He starts Remicade on Friday :( no other meds with it to start, so I am very optimistic he will be fine....hopefully much needed relief from crohns..maybe even remission in the near future.

I would recommend folks try EN cuz it did work, well for the first year, and kept him off meds for a year...important when our crohnies are diagnosed so young and face a lifetime of treatment and scary meds. Ben did gain weight and grow several inches during the 2 years...but, it can be a weary protocol, especially if you are a single parent who works full time and have other kids and it kept him in pullups along with diaper rash, and other unpleasant side effects. We look forward to Ben getting out of pullups and growing up some now! I look forward to a low maintenance therapy, easier on us all. Maybe washing his bedding on a much less regular schedule (daily now)...
 

DustyKat

Super Moderator
Hey ben's m...:bigwave:

I have responded on your other post but will say again....thanks and good luck...:goodluck:

Dusty. xxx
 

Tesscorm

Moderator
Staff member
Sorry to hear that he hasn't been well. I hope he moves to remission quickly!!!

Agree, exclusive EN is certainly a worthwhile treatment to induce remission, however, I can't imagine how difficult it must have been for both of you to maintain for such a long time.

Sending wishes that he feels well very soon!
 

AZMOM

Moderator
I know you must be frustrated. But you sound at Peace with the path you are taking. Prayers that Remicade will help him quickly!

J.
 
Interesting EN story I wanted to share:
I met someone the other day whose son has crohns disease. He is now 37 yo and was diagnosed at age 16. After diagnosis he participated in a study being done at the local children's hospital (I think it was in Omaha Nebraska) on EN vs prednisone to induce remission. He was kept on exclusive EN for 6 months. He was also allowed clear liquids such as sprite, water, and Jolly Rancher Candies. AFter the 6 mod he went into remission and has been in remission since then. He does watch his diet but has really not had a flare or problem since then. I think that is amazing and again makes me mad that our doctors did not offer this to us when our daughter was first diagnosed.
 

DustyKat

Super Moderator
I too don't understand why the US doesn't use EN more in children. I can well understand your disappointment and frustration that this option was never suggested or offered to you. :(

Dusty. :hug:
 
I really think if we were told in the beginning it was the best option that it would have been easier for Caitlyn to accept and do it. When we tried it now she was older and not as willing to listen to us being a teenager.
 
So after a bad month and even worse weekend my D has decided she can't do this anymore. Her symptoms aren't subsiding, the prednisone taper is making things worse and all she is thinking of is spring is in sight and she can't manage another summer tied inside. She is ready for surgery. When last we visited the doc she mentioned again feeding tube, but kinda put a negative spin on it that her patients don't ask for it, it's not a favorite way of treatment for patients, etc. After our lengthy talks the last few days D is ready to try the EN before surgery. (I want to avoid surgery as much as possible) My questions after reading through the EN forum & this thread are this:

1-Is she wearing this all day except for bed, or only bed? Do you get to chose this or does the doctor decide? Do they put the 'food bag'' in a backpack they wear? or is it put on something they can secure around he waist?

2-I see Tesscom 's son did lots of activities with it. How was the energy level? Besides swimming was their anything he avoided?

3-How hard is it to put in/remove the tube? Can it just be left in 24/7 so she won't have to deal with the awkwardness or pain of removing/putting in the tube? Both D & I are nervous about this part.

4-I was told to get decent results you normally have to stick with this for a minimum of 3 months. What was peoples time doing this?

5-Can it be removed for special occasions? D is having her 8th grade graduation & is concerned with being the kid in all the pics with a tube.

6- Is there something you wish you could have done differently in this process? Any tips to start out?
Thanks for any feedback!
 
I'll tag in Clash as her son has started this and is older.

I'm not much help. Grace was four and had her n-g tube for four months and then has a g-tube permanently place. It's definitely worth it for us.

Your poor girl. Hugs to you both.
 
C has been doing EN with a ng tube for several weeks now. The parents on crohnsforum have been invaluable during this process. First, I guess I need to say C has not been doing exclusive enteral nutrition, his has been 90/10%(90% EN/10% food).

1. C put his in around 5pm and takes it out in the morning when he started out. How long it takes the feed is dependent on the speed at which he sets the pump. He has now worked up to a speed that allows him to put it in later in the evening and take it out in the morning. Also, he doesn't always take it out, he will sometimes leave it in and just flush it if he had nothing planned. You can get a backpack if you so desire, not sure if you purchase or the ins company does. We have an iv pole that was delivered with all the supplies but he has fitted one of his old backpacks with the equipment when we have traveled.

2. Since C takes his out and I believe Tesscorm's son did too then there are no restrictions, I can't speak to energy levels since C also deals with a form of arthritis that can zap his energy but he does swim therapy for the arthritis. One of the main reasons C was placed on EN was due to an inability to gain weight. The day before EN was started he weighed 111 lbs on our scales at home this past Friday he weighed 126 lbs so it has been great for his weight.

3. In the beginning, we had a lot of issues with putting the tube in. This was due to the fact that the dme company was sending a larger tube(8FR) and the tubes also had no stylet(guide wire). Thanks to the parents on the forum I found the right size(6FR) and knew to order with stylet. Since then it takes C no time to replace the tube(seconds for actual placement) and there is absolutely no pain.

4. C will have his in on 90% for at least 8 weeks then he will either continue 90% for 4 more weeks or gear down to maintenance which will be a lot less than 90% bit used to help him maintain weight gain.

5. In C's case he removes all the time so it would be a yes for removal for special occasions, in fact prom is next weekend and he will switch feeding times to ensure he gets all of his formula but will take it out for the day and evening for prom.

6. I wish I had known about the tubes with stylets, they are so much easier than those without. In the beginning, he would swallow water to get past the gag reflex and that helped a lot, now he doesn't have to. Also , keeping his chin to his chest helped keep the tube heading in the right direction. Due to the issues with not having tubes with stylets we had a few rough days and I am so grateful that all the knowledgeable parents on here guided us during that time. Now it really is no big deal for him to remove and place. I do notice that he will just leave in and flush during the week a lot since he attends a flex school that allows for independent study.

I hope some of this helped. I'm sure Tesscorm will be by as well and truly once you get the hang of it all it isn't a task to be dreaded at all. Good luck.
 

my little penguin

Moderator
Staff member
One other option is drinking it orally.
DS absolutely hated the taste but really did not want a tube.
He drinks peptamen jr .
I know jmrogers son drinks peptide jr.
It took over 2 hours for him to drink the first one.

A rough couple of days then he was fine.
He did 100% EEN no food and now continue on maintence of two to three a day.
Some kids have used kids boost or pediasure without a tube -crohnsinct kiddo

Good luck
 
We have done the oral method to massive failure. Taste is a big issue. D has been on modulen orally and couldn't keep it up during time at home away from the hospital. This is why the doc mentioned the tube. That, and me mentioning Tesscom's son doing it with success.

D is now down 9 lbs since beginning of February when in the hospital. Weight is a big issue. She is already marked as 'fail to thrive' in her chart as she has not grown at all since all of this. 2 years and no growth at this age are big red flags. This is almost her last growth period. I am very concerned. The decision of EN is not a light one for us, but more the thought that nothing is working and we need to consider all options. This I think maybe we should have done a while ago.
 
My son hated the taste so had the NG tube for 8 weeks. He kept it in for the full time - both of us were quite relieved not to worry about putting it in again! Energy levels were quite good while on EN and he continued sports throughout. He went to high school with the tube attached o his cheek and was fine. No one teased him and he seemed okay.
I "fed" him at mealtimes with the formula, we didn't have a pump or anything going at night.
Good luck, I definitely think it's worth it
 
Location
Canada
My son also used a NG tube that he inserted every evening and removed every morning. He was 10 years old when he did it. I too was very anxious about the inserting of the NG tube but somehow my son wasn't and approached the whole thing as if he was learning a fun (think 10 year old boy humor) party trick. He spent 1 hour with the GI nurses learning how to insert the tube and they just talked him through it and got him to do it himself the very first time. It was such a non issue for him I couldn't believe it. For him the hardest part was finding where the tube has to take a turn at the back of the nose. It wasn't painful but just took a bit of fiddling to find the right spot. In about 5 days he could insert the tube with absolutely no help from anyone in 12 seconds flat (he made me time him). If I told him right now he had a choice between a course of prednisone or EN via an NG tube he would choose EN without hesitation. My son is such a picky eater he would find drinking the shakes a much bigger problem than inserting the NG tube.

My son also used a 6Fr size tube but we took the guide wire out before inserting it. This was just part of the instructions that the nurses gave us from the beginning and we didn't question it as it all worked out so well. We also used some lidocane gel (the kind you can use for teething babies) on the end of the tube and he would kind of snort it up his nose just before inserting the tube. He used the gel for about the first week and then he decided that he didn't need it.

When my son was on EN he was very underweight and it was a HUGE relief for me to know that he was getting the right amount of nutrition. It was so much easier than nagging him to eat more all the time.

If your daughter is up for it have her do the inserting of the tube, even the first time, rather than someone else. I think that it is much better for the person getting the tube inserted to do the inserting as they can feel when to stop pushing and where to adjust the placement of the tube etc. If someone else is inserting the tube there is inevitably a bit of blind pushing around of the tube which I think must be uncomfortable.

Lastly my son did EEN for 8 weeks. He was allowed clear fluids (pop, broth, apple juice) and a small amount of hard clear candies (lifesavers) and gummy bears.

Good luck. I hope it all goes well!
 

crohnsinct

Well-known member
Hey supportivmom,

I am so sorry that D is having such a rough time of it. I am a big advocate for EEN for achieving remission and for supplemental nutrition for weight gain and growth. However, I think the most important thing for D right now is probably getting her to remission. Once you get inflammation under control whether with drugs or EEN she will absorb more nutrition and the growth/weight gain will follow. EEN has an excellent success rate at at achieving remission and mucosal healing but once EEN is discontinued it is usually just a matter of time before the disease creeps back in. Some supplemental EN has shown some success at extended the remission period but most kids find they eventually need some maintenance meds. My daughter was having a hard time achieving remission on Remicade and with steroids because every time we tapered the steroids the disease kicked up a notch. We introduced EEN to help the Remicade along and it did just that but she stayed on Remi the whole time. Maybe just maybe D is the same and Humira just needs a little boost.

FWIW O did 8 weeks EEN then transitioned slowly to food.
 
Thanks CT.

I know we are in trouble when D starts giving up or willing to consider things previously turned down by her. EN has to be a better way. Tess spoke so highly of it for her son. The meds just don't seem to be enough for D and I don't think uping meds are the answer anymore. Almost 2 years and we still aren't at a manageable state. EN seems like such a natural way of treating things and maybe we should have done this a long time ago. I have to they this before I let them do surgery on her. I will kick myself if I don't look at all options before surgery.

I'm headed off to the local crohn's chapter meeting now and am looking forward to hearing some adults take too.

How long was your daughter on EEN cct?
 
We did 8 weeks of EEN, this last fall and 6 weeks of supplemental about a year ago to try and get weight up. I'm a huge fan of it and I think whatever delivery method will work. Jack chose to drink the formula and I will say the negative to that is you really have to be on a schedule to get them all in. Jack was never hungry so he wouldn't think about them. If he slept in then we were behind the ball to get them all in, kwim. He needed 8-9 a day so it was roughly 1 every 2 hours and they needed to be cold so going anywhere you needed to plan how many do we need to bring.
He did go to his first school formal dance while on EEN dinner was interesting but he had a great time and we made it work.
 

crohnsinct

Well-known member
Same as above. 8 weeks EEN then a slow reintro to food. She wasn't allowed anything but water during the exclusive period. Oh wait...allowed to chew one piece of gum a day. She drank Boost and Ensure and they worked. Our doc chooses to try the most palatable formulas orally first and if they don't work he goes down the line to semi elemental and elemental but as you go to the less palatable there is a higher chance you have to use the tube. Boost and Ensure worked for O.

She did hers around the same time and there were bat and baz mitvahs galore and she walked in with her little cooler of shakes. The class took a cruise at the end of 8th grade and we sent a case of shakes. Cousin got married and shakes went to. She drank 10 a day because of her activity level.
 

Tesscorm

Moderator
Staff member
I'm on my phone now so will keep it short but everyone abv has pretty much said all I'd say. S inserted his tube nightly and after just a few days, it was no issue at all. Given the choice, he would also probably still prefer the tube trust her than drinking that same volume orally. His energy level was great - he started back with 2+ hours/day of fitness and phys ed classes plus two hockey teams within 2-3 weeks (although it took longer to regain his pre-sick stamina and muscle). And as clash's son, adjusted his schedule or pump speed to work with his schedule. I'll try to get on the computer ltr if u hv more questions.
 

Tesscorm

Moderator
Staff member
Just some extra info since D is being treated at the same hospital as S was... I was surprised you said the dr put a bit of a negative spin on it?? When S was diagnosed, steroids were only vaguely/briefly mentioned, it was all 'EEN is the treatment' but I don't doubt severity/location/etc. play a part in treatment recommendations. At the time, the hospital was using only Tolerex, which is not drinkable so perhaps that is why only the NG tube was offered. At S's diagnosis, their protocol was EEN through NG tube overnight and removing tube in the morning (keeping the tube in wasn't even mentioned as an option??) and clear fluids during the day - very much like Twiggy's options - ginger ale, 7-Up, gatorade, apple juice (no fibre), clear broth, freezies, popsicles, jello, hard clear candies. We were not given any limit re the clear liquids (other than watch sugar in candies). S would take broth to school so he could have lunch with his friends and I arranged for the school to keep a box of freezies so he could grab a couple every day. He'd then have broth for dinner again and whenever else he wanted it. Breakfast, lunch wasn't much of an issue because he said, after ingesting the formula all night, he wasn't really hungry. Evening was a bit tougher as he'd be getting hungry by then - the broth helped but, really, distraction was the best solution. If I known more about EEN at the time, I probably would have asked his GI if he could add a Boost shake here and there to lessen daytime hunger.

Scheduling was a bit of an issue when he was on full EEN as he was taking in 2000 ml - which required 8-10 hours to run. When S had a late hockey game, I did allow him to miss first period class so he could finish the formula. A couple of times, he also just ran the formula for an hour or so after school to reduce the amount overnight (but this meant inserting/removing tube twice). So, the schedule was workable, just needed a few 'accommodations'.

As Clash's and Twiggy's boys found, after a few days the insertion was nothing and S also asked me to once 'time' him and it was approx. 10 seconds. :) Removal in the morning is even simpler - it just slides out.

S did find the sensation of having the tube in his throat bothersome the first couple/few days - not painful, just the feeling of something there... but he became used to it quickly.

Once he was on supplemental only, it was even easier as it was half the amount so he would put in the tube immediately before bed - at half dose, formula only ran for 4-5 hours, so easily done while sleeping.

Also have a look at some if imaboveitall 's posts - her daughter has also done EN through NG tube for years as a treatment/supplement. :)
 
D is being seen by a few docs now to get to the bottom of everything. She has 1 @SickKids & her regular GI she has had since diagnosis. It wasn't the SickKids doc speaking negatively of EN, it was her GI. This was way back after her anaphylaxis reaction to Remicade when we were discussing alternative options now that we couldn't do Remicade.

Right now the SickKids doc is only being used as a consult I think. We went through everything at SickKids as if D was never diagnosed, and did blood work, MRE, Ultrasound, colonoscopy and a consultation with the nurse & Dr. Griffiths. I have heard nothing back from the IBD Center except to confirm her diagnosis (duh!) and that Dr. Griffiths would be consulting with D's GI. That was about a month ago. So far there has been no change of care except coming off Prednisone.

This is why I think we are looking at options again ourselves. Maybe they thought since I haven't been screaming for care things are better and no need to rush the process. After another bad weekend and now a total of 12lb weight loss in 3 weeks I called the GI this morning and we are going in today.

I will be asking to do the EEN at the appointment today. I am refusing to let her go back on Prednisone. The withdrawal was horrible and did nothing for her. I'll let you know how it goes. I am printing out the thread so I know what to ask for and ask about.
 
So EN is ordered. It is inpatient in the hospital for 3 days. Anyone have to check into the hospital to start this? Evidently there will be a PSW that will come to the house too. It doesn't seem like it needs to be that complicated.
 
Location
Canada
That is really weird. My son literally learned all he needed to do in 1 hour and he was 10 years old at the time. No hospital stay needed.
 
I found it weird too. They have youtube videos on it so it can't be that complicated. Not sure what a 3 day stay will accomplish except boredom
 

Maya142

Moderator
Staff member
That's really strange. Our GI has brought up ng tube feeds many many times and at our hospital it's a 2 hour outpatient appointment.
 
My SIL is a nurse, trained in Ontario, practices in FL. She just told me it can be done as outpatient but because of the crohns in her esophagus the doc might just be overly concerned in case she vomits or has a reaction to the tube. She thinks the doc is being extremely careful.
 

Tesscorm

Moderator
Staff member
S was already in the hospital when he started EEN... but they did start it two days before he was discharged. They'd said they would be increasing the rate/speed until he was at a level where he could get it done overnight. But, yes, the 'learning' certainly didn't take very long.

What your SIL said makes sense re her esophagus.
 
Right now D says she wants to leave the tube in 24/7 and just hook up the 'food' when she is home. She has never been one with issue of what people think of her. She might be able to pull it off. Either way we need to know how to take it out/in. Doc said she would get a PSW to check in on her with it once home too. Looks like there will be a little bit of learning but manageable. Staying overnight in the hospital for a few days will really stink.
 
We use a pump. It is definitely quicker and the adjustment of speeds as he sees fit affects the length of time the feed will takes. Also since he is up and down and active I would think the pump would be a better choice but since a lot of kiddos are doing night time feeds gravity may work just as well. Good luck.
 
We are (sadly) experts on enteral feeds as V has done them for nearly SIX YEARS, every night.
She had tube placed in hosp under sedation initially BUT that was because she was dying, and I was not in a state of mind to question anything, nor was she.

She left it indwelling for three mos, went to school (fifth grade) that way and then over Christmas break started taking it out/reinserting it in the morning.
She was so malnourished that at first she needed 24, then 16, hours/day of feeds.
Now she is hooked up just four hours, at a rate of 250cc/hr.

PM me if you feel inclined, I know V would Skype with any kid who needed to watch her insert, and is open to being Facebook friends too. ( I myself do not have Facebook). She cannot understand why everyone makes tube insertion such a big deal. :eek2:
 
Thanks. I will talk to D about connecting. It would do her some good. I think it is the not knowing that is the concern. Once we get in there and understand it all it probably won't be a big deal. This is our first bout of this, as the last time she was on TPN, so the only thing about that was just IV with a PICC line, which was no big deal after everything.

Why have you been doing this for 6 years? What are the benefits for doing it that long? We are trying this to prevent having to double up on the Humira or going back to Prednisone. Doc thinks 6-8 weeks of this will help and potentially put her symptoms into remission. If I remember my conversations with Tess it was a short term solution for her S. I am hoping it is a short term solution for my D too. Is there anything I can do to promote the short term solution to work for her?
 
No, Tess' Stephen used it for years.
The rationale behind the long term use is, it WORKS so why stop it?
Yes it can put them into remission, but when it is d/c, they often relapse.

For V, I was VEHEMENTLY against using meds and we used the feeds ALONE, NO drugs at all, for three years and she had a great clinical remission, the key phrase being clinical, which means she felt great/looked great/was growing/ was nutritionally sound/went through puberty BUT had simmering inflammation all the while.

Feeds were not enough after three years she began having extreme fatigue (her usual symptom) so drugs were, one by one, added and failed.

The other rational reason for using feeds long term, even when they are not enough to maintain a remission, is the pure nutritional aspect. I didn't want her undernourished ever again. They DO have malabsorption. They DO have growth issues so commonly (the kids at Camp Oasis looked like waifs to me next to V) and they do often have disease present even when appearing well.

These kids will need treatment always. ALWAYS. Be it drugs or feeds. So if I can accept long term dangerous drugs, formula feeds are a walk in the park to accept.

Tell your girl about Starbright World also, an online place for teens with chronic illness.
 

Tesscorm

Moderator
Staff member
Yes, ditto to imaboveitall's comments above. S did 6 weeks 'exclusive' but then continued with supplemental/maintenance for two years with no meds (except an antacid). Same as V above, clinical remission but simmering inflammation so we added remi after two years. When S left to go to university, he didn't want to take the pump, etc. and it was a harder sell as his GI had told him he didn't need it as he was now on remicade. However, I'm more inclined to agree with imaboveitall in that they require extra nutrition (and I also very much believe their nutritional status just generally helps their wellbeing) so, S and I compromised - he drinks 1-3 Boost shakes per day at university. I also read an article that showed there was a significant increase in remicade's success when it is combined with enteral nutrition (it is posted in the kids' research section) - I also shared that info with Stephen.
 
I have to ask... Pumps, bags, food for the bag... Is it normally covered by insurance? If not how much are the pumps? Where do you get it? I know boost and whatnot aren't covered. Doctor thinks as long as it is her only nutrition all of it is covered but its been a few years since she had someone willing to try it.

Imaboveitall, D is on Starbright. Not as active as she should be though. She says she isn't finding what she needs on there so just is sticking with the friends she has without Crohn's for now. I am really hoping this Gutsy Walk she meets some kids to talk with. Last year everything was too new and nervous about making friends.
 

my little penguin

Moderator
Staff member
The answer for insurance - is it depends....
Ds has had his covered for the past three years but he drinks his orally and will continue until he is 18 if i have my way. Although the GI said he could stop if he wanted too since he is growing and gaining.:batty:

But I explained that DS is not fighting it now so until he is - he drinks the peptamin daily even if its just one vs his normal 2-3
 

Tesscorm

Moderator
Staff member
My insurance did not cover any of it - in our case, it was considered a nutritional supplement only. However, the nutritionist at the hospital, who helped with info re insurance, regional medical agencies and Trilogy said that they did have some patients whose insurance did cover it (so depends on your coverage). In our case, a regional medical agency did cover all of it. The agency rep came to us at the hospital and then S's care was transferred to the local office. We were also told that Trilogy healthcare (a provincial medical service) would cover it if insurance did not. Apparently, no one is declined through Trilogy but they do take a deductible based on your income.
 
Our experience with EN treatment was very similar to Tesscorm's. Our GI initially recommended this as a preferred treatment to using Prednisone to induce remission. At first we were squeamish about the thought of having the NG tube inserted and were nervous about the thought of having to live with the tube. After some discussion with the Pediatrician we agreed that there were fewer side effects and if it ended up not working, we still had the option of using the steroid treatment.

Our GI explained that we would only be using this treatment to induce remission. He wasn't confident that this would keep Maddie in remission long term so the decision was made to start her on Imuran.

We found that while the NG tube was in that she could do almost anything. The only activity she discouraged from was gymnastics because of the bouncing around.

Because of her age (3) it wasn't feasible to insert and remove the tube daily. We were eventually trained by the Pediatric outpatient department on inserting the tube ourselves. While a bit scary at first, it turned out to be not so bad. Better than the cumulative side effects from Prednisone.

We found that the worst part for her was right after the insertion of the tube. She would be in a little discomfort but mostly angry with us that she needed it in. Usually a couple hours of a combination of angry and mopey. (To be fair, I'd be pretty upset too) after that, she'd be fairly happy and close to her usual self. Usually a week into treatment she is feeling well enough to head back to daycare. The good news is that kids are pretty easygoing at that age and don't seem to be affected at all by the tube attached to Maddie's face. They also like the stickers that she shows up with. (The hospital sent us home with a large number of the "Feeding Friends" stickers.)

Anyways, we've now been through two 6 week periods of treatment and we still have the pump, IV pole, 2-3 months of bags and formula (ensure plus is what our dietician recommended) ready to go if we need it. We also have a spare NG tube at the ready for when the next flare happens. We hope it won't be needed anytime me soon but it's better to be prepared.

Feel free to ask if there are questions if you want. Our GI made it sound like EN was a preferred treatment to steroids so I was a bit surprised to see it wasn't even an option for some people.
 

crohnsinct

Well-known member
Here in the states it depends on your insurance as well. O's EEN was Boost and Ensure and it was all covered. She drank it. The company delivered cases of it at a time.
 
Maybe part of the reason we are heading to the hospital in all this is to get insurance to cover it. I was told things were quicker to approve us for Remicade because they gave us a dosage in the hospital forcing insurance to approve quickly for her next dosage in 2 weeks. The patient care for Remicade had told me it gets approval faster and easier because they can't deny or argue the claim. Doc mentioned Modulen again as D tried it her 2nd time in the hospital and couldn't stick with it due to the taste. I know the cans were covered when we went home. I'm more concerned with the tubes and pump. I'm supposedly saving money by not buying her food, so its probably a wash but when I looked online the pumps were like $500+ Ouch.

I know about Trillium Tess. We didn't qualify either due to income.
 

Tesscorm

Moderator
Staff member
Sorry about Trillium - we were told that no one could be denied?? Perhaps their policies have since changed??

You don't have to buy the pump, they can be rented as well. And, there is a possibility the equipment (pump, tubes, etc.) may be covered by your insurance even if the formula is not - I do remember my insurance mentioning something along this line but, in the end, I didn't need to pursue it.
 
More likely to be covered if administered via tube, I was told.
You can find pumps and bags on ebay if you ever have to; I looked there when I wasn't sure hers would be covered. This is in USA though.
 
Doc mentioned Modulen again as D tried it her 2nd time in the hospital and couldn't stick with it due to the taste. I
fyi, there are tastes you can add to modulen, they have chocolate and banana and stuff, don't know if it's from the same brand, but the hopsital here gives ppl flavors to add to it

just ask Nestlé, they know them
 
I will look into that when she actually tries Modulen again without the NG or G tube. If its going to her stomach directly I doubt she will taste it and don't want to waste that if she doesn't get the benefit.
 
Doc is preparing us for both. Trying NG tube first. But due to her vomiting already there is a possibility she won't tolerate the NG tube and would have to go g tube. I'm told if it is a g tube its temporary and easy to have removed.
 
Here in the states it depends on your insurance as well. O's EEN was Boost and Ensure and it was all covered. She drank it. The company delivered cases of it at a time.

Hi, I'm inquiring about other experiences with using Boost Ensure (drinking it). Our GI has suggested this option because prednisone is ineffective for my Son and we don't want to use Remicade. Has it been effective? How quickly? It goes against my "SCD" sugar is bad perspective but I'm trying to be open minded.

My Son's first diagnosis was when he was 10. He was treated with prednisone, budesonide and 6MP. After 1 year we started the SCD. He went into full remission. After 2 years on SCD and being symptom free, he returned to a "normal" diet. After 1 year Crohn's returned. At 14 now, he's been on prednisone for 6 weeks along with SCD. We are not surprised that the steriod is not working. Also, I know he's cheating on SCD, plus I could not convince him to do the intro diet long enough and was worried about him getting enough calories to support him while he's running cross country in high school, so I probably introduced complex foods too quickly.

Son says he'd rather do ensure/boost route than SCD.
 

my little penguin

Moderator
Staff member
EEN can induce remission when done as formula only no food
That said however - most lose remisson once more than 10-20% of the daily calories are returned to solid food.
I understand being hesitant on remicade but undertreated crohn's can be dangerous and deadly. So you need something .
EEN is not a long term solution especially given your child's age and growth potential .
It tends to be done for only 6-8 weeks. While waiting for maintence meds to kick in.
It can be added as supplemental to push things over when a med isn't enough by itself.
Or added just to ensure nutrition and growth take place .
DS started on EEN for 9 weeks with 6-mp
It wasn't enough to induce remission

You could try Mtx before remicade
It works for some as a monotherapy
It didn't work for my son.
He eventually needed remicade.

I wish I could say it was easy but it wasn't.
Also EEN has a much lower response rate at inducing remission after disease has been present for a while and other drugs have been needed.

Good luck
 
Hi My Little Penguin,

I'm not sure about your abbreviation does Mtx==Methotrexate? GI said we'd have to use Methotrexate along with the Remicade. I assume you are suggesting that we switch to Methotrexate now, try the EN, and then go to Remicadee if all else fails?

THX again
 

my little penguin

Moderator
Staff member
Mtx is methotrexate
So Mtx by itself
However you may want to ask the Gi why he was recommending remicade
What the disease severity is and where it was active now .
He is recommending remicade for a reason.
You need to understand the pros and cons

Most recommend Mtx with remicade to reduce the production of antibodies .
However studies show mixed results as to whether that really stops antibody.
DS did remicade alone
But had two allergic reactions by the 7th and 8th infusion
He did not have antibodies but tends to be a very allergic kid
Anaphylaxis to foods bees etc....
He then switched to humira.

Biologics by far although scary have had the least side effects for my kiddo
I wish we had tried them sooner.
I will tag a few members who also are on biologics
Tesscom
Clash
Jmrogers
Farmwife
Mehita
Araceli
Crohnsinct
Brian'smom

All will tell you the same
 
My son was on remicade and mtx. We dropped remicade before surgery and have now added it back. He has had no side effects from either med but both were not enough to control the inflammation. Hopefully now it will be.
 
My DD did EEN as a solo therapy but wasn't enough to help.
She is now on Remicade and MTX with no side effects yet.
 
Remicade only here but we did use methotrexate as a mono therapy with good results as far as disease control unfortunately my son was one of the extremely rare few who have lung issues while on it so we had to discontinue also the reason we are doing remicade as a mono therapy but it is working well for him.
We did EEN about a year ago in place of prednisone to try and get a flare under control, symptoms subsided but his fecal calprotectin numbers went up which is one of our few markers that actually tell us what is happening.
We tried the SCD for what's it's worth, it was too hard for him to stick to and he just didn't get enough calories from what he actually would eat and we already had major growth and weight issues. For us any diet that he is not fully on board with isn't going to work because I'm not/can't be and don't want to be with him 24/7. For the most part I let him have 95% say in treatment as he has to deal with the daily living with CD but I get final say currently but he knows he opinions are being heard.
We went EEN last year because he told his GI he refused to do prednisone so what were his options. GI told him EEN but it was very hard for people to stick to and he had to be 100% committed otherwise prednisone was a better option. Jack said he was on board with EEN and wanted to go that route. I don't think it would have worked otherwise as we had an awful time getting him to drink the supplements when he had to for supplemental nutrition because he didn't want to. So I think especially with a teenager who are apt to try and control whatever they can especially when things feel out of control and diet is one are they can control or cheat that unless they are 100% committed it's not going to work. Make sense?
 

Tesscorm

Moderator
Staff member
My son did exclusive EN for 6 weeks to induce remission and then continued with supplemental EN (1/2 dose, 5 days/wk) as his maintenance treatment for approx 2 years. It did induce and maintain clinical remission (no outward symptoms) and reduced inflammation, however, it did not eliminate all inflammation (confirmed by MREs). Upon his transfer to an adult GI, his new GI was adamant that the simmering inflammation would lead to permanent damage and complications and strongly recommended remicade. We followed his advice and he has been on remicade for almost two years.

He's had no problems with remicade. We did tighten his schedule (from every 8 weeks to every 6) but this was because testing showed no remicade left in his system at 8 weeks. He goes to his infusions, usually sleeps or takes his laptop and just relaxes. He feels fine after his infusion and has sometimes gone directly to see friends or even to the gym right afterward.

Some do feel fatigued after the infusion but that may also be related to premedication with benedryl (as per some GIs preference).

An MRE done after being on remicade for a few months showed significant inflammation improvement and even narrowing that had previously be apparent, was no longer seen.

A friend who's daughter (approx. 13 years old) also has crohns, is being treated with remicade and mtx. She does feel a bit fatigued after her infusion but is otherwise fine. And remicade has been a huge improvement for her as well!

:ghug:
 
We started Remicade 2 years ago due to anal fissures. My daughter was symptom free for one year but Crohn's was working it self from terminal ileum to other parts. She did not have any symptoms so we thought the other meds were working, she is on remicade every 8 weeks by itself and no side effects at all. To us it has been the miracle drug, it was very hard to decide on it but now I hope she can stay on it for long time. Whatever meds you choose I wish you the best outcome.
 

crohnsinct

Well-known member
Hi there! Another IV Leaguer here.

The way our doc describes EEN, SCD, FODMAP etc is that they are nutritional therapies and can work BUT only when done 100%. When you come off it is just a matter of time before disease creeps back in. That time differs for each person. At our last appointment, he did say there is encouraging research coming from Isreal with diet (very similar to FODMAP) and also that there are some clinics here in the US who are using a period of EEN, then regular diet then back to EEN. While these are all encouraging he isn't quite ready to use these protocols on patients with active inflammation. Perhaps he will be starting with patients in deep remission for over a year and see how it goes.

My daughter went straight to Remicade as she was very sick and we didn't have time to play around. Remi only worked while she was on steroids as well. Every time we tapered disease kicked back up. Doc wanted to add Mtx to the Remi. We declined Mtx and added did EEN for 6-8 weeks and it got her to remission. She does great on the Remi and has been on it for almost 3 years with only Remicade induced psoriasis as a side effect. We eventually added Mtx but that was for psoriasis.

If the doctor feels you have time to give EEN a try, I would try that but you do have to prepare yourself for what you are going to do to keep him in remission. The thing about cycling on and off EEN is you have to be careful about disease kicking in and then subsequent healing and the building up of scar tissue. You really want to get to remission and stay there as much as possible.
 
Hi everyone,

Here's an update on my 14 yo son who started EEN Boost about 4 weeks ago. He had blood work done on Tuesday and his CRP is down to 1.1 mg/dl (from 5.6mg/dl)! Tomorrow I'll be talking to his GI to find out what the next steps are. He was scheduled to begin Remicade on 12/2. I'm just not sure what his GI will say about that. I'm hopeful we can put it off a bit longer but I'm trying not to get my hopes up.

He is also on 20 mg pred. We D/C'd 6mp on the day before the blood draw at his GI's recomendation in preparation to moving to MTX once he's on Remicade.


Son 14 yo CD since 2010. Pred, only at the moment. Previously 6mp.
 

my little penguin

Moderator
Staff member
Make sure you discuss the length of time of EEN with the Gi .
It tends to work like pred in that it lowers the inflammatory numbers but generally can't be used long term since once you start food the inflammation starts to come back .
So you will need to discuss a long term med with the Gi if you don't intend to do remicade .

Also before you sign your kiddo up for EEN only for life - try it yourself for a week .
Being a teenager who doesn't get to eat is doable short term but longer term can be extremely hard.
 
Thank you for sharing! My nephew (15) just finished his exclusive nutritional therapy and is now being reintroduced to solids. He took labs yesterday after 101 days of exclusive therapy and we are awaiting results. His physician says the true test is how he responds to food after. We were given a list of foods to get him back on solids but they are full of preservatives and are difficult to digest. There is a recommendation to stay away from foods high in fiber. My older niece has a similar recommendation because she has tiny intestines and they want to prevent blockage, but you nephew doesn't have this concern so I am unsure of why this is the recommendations. My nephew is an unusual kid in the sense that he has always been health conscious and doesn't like unhealthy football so we have been trying to modify the list in a way that makes sense. Right now he has been sipping on organic apple juice and I was going to make him vegetable soup, thinking the boiling will get rid of the fiber. My concern is he will not get enough calories. Any advice?
Josie
New to this forum....so happy to have found it!
My 8 yr old son was diagnosed with Crohn's in July 2009 and was on prednisone and Imuran for about the first 8 months....when his docs realized how severe his case was and that he was steroid dependent to stay in remission, they offered a choice of biologics (remicade/humira) or enteral nutrition. I am an RN who has cared for patients on tube feeding so I new we could do this....but new it would be a leap for Ben...having an NG tube taped to his face for a month at a time. But when I researched the biologics I couldn't believe the risks...frightening to me. So I decided to search for education on how to approach the tube feeding treatment....there was not much, even his docs wouldn't choose it for their own kids!! I finally found a book called, Beat Crohn's - Getting into remission with Enteral Nutrition by Margaret Oppenheimer...this book was like EN for dummies!! It validated my thoughts on the safety and effectiveness of this treatment for my son to the point that it was a no brainer....he even read parts and bought in to it.
He started EN via NG tube in April 2010 and within the first month was off all meds and bouncing off the walls with energy....full remission. Pain was gone, and he started catching up on growth. Now he has a PEG tube so we can keep doing this treatment and the world doesn't have to know about it....

Here's my question...why don't more kids in the US and Canada choose this option? If it is due to lack of education and the unknown, or just scared to try....I am ready willing and able to talk to you, help out, show you how, etc.
At Ben's appt. in May this year, he has grown 4 inches in the past year and a half, and has gained 15 pounds!! Still off meds, missed hardly any school. He tube feeds for about 8 hours over night and can eat what he wants during the day....

What do other moms think about this treatment? Would love to hear your thoughts.....

Beth
 

Tesscorm

Moderator
Staff member
Fibre is more difficult to digest and cause some people to have difficulties. I know when my son reintroduced foods, it started with 'white' foods - breads, pasta, rice, cereal, etc. and then we added proteins. Dairy, fruits/veggies after (can't remember which came first). My son was to reintroduce each food types over the course of 3-5 days.

FWIW, I did post my son's reintro diet - I think either here or on the Kids on En thread.

But, from what I know now, my son's reintro was quite quick. There are others who reintroduce foods at a much slower pace. And, reintroduce foods one or two at a time, rather than an entire food group at once.

Is he doing any supplemental EN? After my son completed his six weeks of exclusive EN, he continued with supplemental EN at 1/2 dose (1500 cal/day) for the next two years, in addition to his regular diet. He ingested his EN formula overnight thru NG tube, so this helped in that it didn't interfere with his daytime diet (ie wasn't too full from drinking a shake to eat his lunch...). But, even if your nephew can't get in 1500 cal/day, even some supplementation will help ensure he is getting all his nutrients.

As far as 'low fibre' fruits/veggies - I know cooking, ie soup, helps to make them easier to digest and I've also read of lots of members juicing to get their fruits/veggies. Also, when we were reintroducing fruits/veg, we were told to avoid seeds, skins and membranes (ie skin around orange segments).
 

my little penguin

Moderator
Staff member
You can't go straight to food
You add food slowly while still drinking formula to make up the difference in calories
Healthy doesn't necessarily mean it's good for a crohns gut
Even in remission it's still not functioning at 100%

Cooked veggies still have fiber
Juiced veggies with pulp removed do not
Plain rice
Boiled chicken
Potatoes mashed

Anything that can be mashed with a fork first
Then more solids
Takes a few weeks
Get back unhealthy food first ( easy on the gut food )
It's not for life just a few weeks
Then try out which veggies he tolerates

Potato soup with zucchini purée is a favorite at my house
Hugs
 
Both my daughter (8 yr old twins) are doing enteral therapy and it has really helped with growth. With one it isn't helping her inflammation like we had hoped, but for growth, and energy it is awesome. One daughter was diagnosed earlier and had the NG tube for 6 months, she now has had a G tube for over a year. Her twin sister was just diagnosed a month ago and has her NG tube. It's not ideal, the G tube is so much easier (and not visible). We are hoping she healthy enough to get s g tube placement in Sept. it's nice to talk to another parent who goes through what our family does. [emoji4]
 
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