Adolescents and Teens using EEN

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CarolinAlaska

CarolinAlaska

Holding It Together
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Jan 24, 2013
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It was suggested that I start another thread for adolescents using EEN. I am interested in what experiences people are having or have had using EEN in adoloscents 11-16 years old.

My daughter Jaedyn is 13.5 and will be starting EEN on Tuesday. She will start with a short in-patient visit to get her training, get her going on the nutrition up to full-dose (starting at 1/2 speed and advancing as tolerated q 3-6 hours). She will have a nurse watch as she inserts the tube herself the second day to make sure she is comfortable with it before going home. Today I started the ball rolling by talking to the medical supply company who will be ordering her equipment and filling out a few pages of information for them. Jaedyn is nervous, but seems to be doing okay in these days of waiting before we begin. I'll continue to post as our journey continues.:bigwave:
 
Carol -

This is slightly off topic but I wanted to make sure you were aware that there is a CCFA Camp Oasis program in Washington that your daughter could attend this summer. Here's a link.

http://www.ccfa.org/chapters/northwest/events/camp-oasis.html

The reason I thought of this is because going to camp was very important to my son's ability to accept his diagnosis and some of the things that went with it - NG tube feedings, Humira injections, lab draws, etc. All at the tender age of 10.

The spots fill up very fast so you may want to look at the applicatoin right away even if you're not sure if she can go.

We did NG tube feeding when Badger was 11 and it was difficult toward the end. The urge to eat, to chew became a torment to him. He couldn't bear to drink the formula because of the smell and texture. He is a supertaster and has issues with texture that made drinking formula just out of the question.

I hope you have a better experience.
 
Yeah, Patricia, thanks. I don't know about that camp. Jaedyn would like to go, but she is too young to go by herself and they won't let parents come, even to volunteer. We're trying to figure out what one of us would do for a week while waiting for her to do camp... It's a pretty penny to fly down to Washington for a week for two people for a camp, especially if one person has to board elsewhere.
 
I understand the camp is quite a distance from you there and I totally understand the costs. I did see that there are some scholarships for the cost of camp as well as the possibility of assistance for those who have to travel a long way.

My son first attended camp at age 10 and it was a great experience for him. I was very anxious because he was so young but the camp staff really made him feel comfortable and there were other kids his age there too.

Please don't misunderstand me, this isn't criticism at all - but I wouldn't have thought 13 was too young to go to camp, even one that far away, given the special circumstances and care the kids get.

I guess I just know how much it has meant to my son to be able to go to IBD camp and be with kids who are like him, with adult counselors who have the same disease. I know from things my son has said that camp creates the space for kids to be able to say things and talk about stuff that sometimes can't be said anywhere else. Whether it's jokes about doing clean outs, watching another kid give themselves a shot, having someone else show off their scars, knowing the person on the zip line in front of you has an ostomy - that can't be replicated anywhere else.

So I hope there's a way for Jaedyn to go, if not this year then next for sure. Maybe she could find a way to do some fundraising there or perhaps your ped GI knows of another family who want to send their child and they could travel together if they went by plane. Sometimes it just takes letting people know of your need or hope and the resource appears.

All the best.
 
I don't have any problem with Jaedyn going to camp by herself, I just mean I wouldn't want to send her on a plane that far/travel by herself, also if she got sick, I wouldn't want Tim and I both to be 6-9 hours a way... We might be able to find friends Tim can stay with for a week. We would love for her to be able to go.
 
Camp isn't until late June right? I would sure hope she was feeling a lot better by then.

It is hard to be that far away if she were to get too sick to stay at camp.

You might want to ask her GI about it. My son's GI is the one that runs the camp and I think in the 7 years they've been running they haven't had to send any kids home due to illness that couldn't be handled at the camp facility. Maybe your GI is familiar with the program and can advise you about whether it would be a good idea to apply or not.

Are you members of a church up there? Maybe your minister could contact a church in the area down there and get help finding a place/family for your husband to stay with while she's at camp. We did something like that when our oldest was in the hospital for major surgery and we both couldn't be gone and we couldn't afford to stay close to the hospital.
 
Hi, just wanted to wish you luck with getting the NG tube fitted, etc. My son had the tube inserted in a short hospital stay (one overnight) while they showed us how to do the feeds and made sure I could do it. Andrew was 12 and had the tube left in for the full 8 weeks. He just went to high school with the tube in and luckily no one ever seemed to tease him about it.
Hope it all goes well!
 
Hi Carol,
Violet has used formula feeds via NG for 4.5 years, ever since diagnosis at age 10.
She was so very sick at first that she had to be hooked up to the feeding pump 24hrs/day for 30 days. Her motility was so dysfunctional, we had to keep the feed rate quite low, so to get the 3000+ calories she needed, she had to be hooked up that long.
She went from desperately ill to symptom free in those 30 days.
She was given NO DRUGS AT ALL. Formula feeds were her only treatment for 3 years.
Her gain and growth were and are stellar and unusual in a kid so sick and with active disease which she has ALWAYS HAD. Usually of the silent variety (see her thread if interested in silent disease).

For the first three mos she had the NG tube (get a TINY infant sized one. 6 or 8fr, so easy to insert) indwelling and then began to remove it upon awaking as the feed rate was high enough by then that she could go most of the day without it.
Her stats: before dx 55in 78lbs
at dx 55in 59lbs (life threatening loss)
4mos after starting EN 57.5in 99lbs no that is not a typo
current: 64.5in 150lbs
Her pubertal development was excellent, nutrition status always excellent. She shall remain on feeds until age 16 when growth is complete. She eats any and all foods as well.

After 3years the feeds were NOT ENOUGH and disease progressed and she is now on quite a few drugs plus feeds so it is hardly a panacea. But it is an important adjunct. We wouldn't be without it as compromised nutrition is unacceptable to me.

She could NOT tolerate Pediasure (kid version of Ensure) and needed a peptide based version. If your girl does poorly on Ensure do not give up until she has trialed a more broken down formula. That makes a big difference in absorbablilty.
 
Hey Carol
Jack goes to the camp in Washington I think there is at least one other kiddo from Alaska that attends, I'll ask Jack.
When I told him about Jaedyn originally he asked if she was going to go to camp I will tell you it was one of the best things for him, he came back from camp so much more confident and made so many friends that are dealing with the same things he is. If there is anyway you can make it happen I would highly recommend it.
We have always driven Jack up there 8-9 hour drive a few times we've managed to stay with friends so I hear you on being far away. This year they asked if we wanted a chaperone to fly with him and get him to camp (It is one of the other doctors at his GI's office) so we are seriously considering it and then we will probably driving up and get him.
The camp is amazing. It is beautiful and the cabins overlook the sound and there is a salt water lagoon where they have swimming, canoeing and paddle boarding. Jack knows a lot of the girls she would be in a cabin with and keeps in touch with them throughout the year. I know one of them is on an NG tube right now.
PM me if you want more information. Camp applications just came out
 
Preparing for EEN: How should we change homelife/cooking etc. Is it cruel to cook in the house with Jaedyn here? Do people just stop making hot dinners for the rest of the family for 4 weeks? What about meal times - excuse the EEN child? Have them stay for the family dynamics/social aspects of it?
 
We continued to cook . It just was. DS had EEN over thanksgiving and Christmas.
Those were the only two meals we didn't cook at home - went to inlaws so he would be distracted.
We had him have shaved ice at dinner to maintain oral skills with a sprinkle of cane sugar ( Gi ok d this since sugar is in the formula anyway ;) )
He only had to sit for 10 minutes but he also drank his orally so he drank formula and ate ice chips. He also just drank sometimes.
We got different cups and fancy straws.
He even took his formula to school daily for lunch.
He put it in stainless steel water bottles to drink so no one would know what he was drinking.
The only thing we didn't do was have dessert ( cookies cakes etc)
Around him or make his favorite dishes ( ie pizza )
Good luck
 
In our situation, Marni has a mickey button now. She started out on TPN via a central line 24/7 which was so difficult because of the dressing and need for sterility, etc. Then, we went to an NG tube with Nutren Jr that was supposed to be for six weeks with nothing else by mouth. This proved to be impossible for her. I think I've posted about this on other threads, but I'll say it again here. Marni never has been able to eat a lot of anything. She takes a few bites and she feels full or pain, but either way she's finished. Despite the very small amounts she eats, knowing she couldn't have ANYTHING was too much for her. She became very depressed, which then caused me to suffer from anxiety for which I had to take medication. It was such an awful time. The doctor who prescribed this wasn't our regular doctor, but rather one of the doctos in the group our doctor is part of who was on service at the hospital when Marni went in. Once I consulted with our own doctor and told him how awful and depressing this was for Marni to know she couldn't have any food, he told me to go ahead and let her eat since she barely eats anyway. She had the NG tube for a few months and then, when we saw how beneficial the forumla feeds were, but how inconvenient the NG Tube was, we had a G tube placed with the mickey button. This way, it's under her clothing instead of on her face. She's been on EN for about 13 months now, and while this allows her to maintain weight instead of losing it and even gain a little bit and actually grow, she still experiences pain and, right now, diarrhea. After 5 and a half years since getting sick, she still hasn't achieved remission. It's very frustrating.
Sorry, I'm going off on a tangent. Back to the topic....the feeds help immensely. I urge you to consider a G tube if they will be for an indefinite period of time.
Good luck!
Stacey
 
Sorry I haven't had a chance to jump in here till now...

Stephen did exclusive EN for six weeks, just some quick thoughts...

- ask to get the infant sized tube, Stephen's is 6fr
- Stephen was allowed clear fluids like broth, clear/no fibre drinks like juice or pop (no dark pop like coke), jello, freezies, etc. this helped quite a bit! He took broth for lunch and the school kept freezies for him. He had broth again at dinner.
- we didn't make him sit with us at dinner, he could if he wanted, of course, but he usually sat in the family room
- I gave him the option of skipping certain events if he wanted ormarriving late (after the meal) although I don't think he ever did... Ie he attended his athletic banquet/BBQ and just didn't eat.
- for Stephen, I didn't hide it but also didnt volunteer the exact end date, I thought it would be harder to count down the days but he did know the 'week'. But, other kids here have used calendars, stickers to look forward to the end...
- drink water while inserting the tube so that in essence you 'swallow' the tube. Stephen used his two hands to initially insert the tube and I held the water while he drank (through a straw)
- there is a lubricating gel to make insertion easier, I believe there are also numbing gels
- Stephen found the sensation of the tube in his throat annoying at first, but it only took a day or so for him to become accustomed to it
- I may have missed it but is she having all the formula overnight, if yes, evening seemed the toughest time with regards to hunger - distraction was important!
- also, if worn overnight, tube would flop around and bother him at the beginning - I used a small hair clip to clip it loosely to his t-shirt

Supplies - NG tubes, bags to hold formula, tape to hold tube in place, gel, stethoscope to check placement...

I hope some of this helps! Good luck!!!
 
Yes to everything that Tess has said... We did EEN for 12 weeks. At first we really tried to include him in meals by having him 'eat' some broth or jello but after a few days of that we realized that it was just easier if he ignored mealtime and went and did his own thing (he went and did some homework or played on x-box or something). The rest of us tried to make meals very quick, then leave the table so we could have our social time outside of the kitchen (it's amazing how much social stuff goes on while you are eating!). I also worked really hard not to cook 'good smelling' stuff :)
It was really hard for the first few weeks but once he got going he actually got used to not eating and didn't really seem to crave anything... he enjoyed the freedom of not having to take time out to eat (that's one way to look on the positive side, I guess!).
 
Yeah that
We let DS watch tv In the morning or evening while drinking his shakes to encourage him to drink it all at first .
 
Yes, but I've heard that some kinds are better than others. I think they are planning something called something pore?
 
We tried several different tapes to find one that would be sufficiently sticky to hold the tube in place but not too sticky to make taking it off painful. I have no idea what the one we used was called.

My son used lidocaine gel on the end of the tube for the first week or so to help numb his nose and make the tube insertion easier. He just put a bit of the gel on the end of the tube and then kind of snorted it up his nose, then waited a couple of minutes before he inserted the tube. It seemed to work pretty well. After a week or so he didn't need the gel anymore and just did it without.

We used pH paper to test the liquid that we pulled out of the tube, from his stomach, to make sure the tube was actually in his stomach.

My son also used the 6Fr size tube.

As for meal times we didn't make my son sit at the table. He usually watched TV or played video games. I also tried not to make his favorite dishes and actually made a concerted effort to make meals that he doesn't like. That was actually pretty easy to do because he is SOOOO picky.
 
Oh my gosh, all this talk about the NG Tube brought back some memories of how we "attached" it so the tube didn't just hang. I think this might be helpful for a lot of you out there. If I have a photo of Marni with the contraption I made for her, I'll post it if anyone wants to see it.

I had a set of earphones, the type that didn't have a head band that went over the head or beind the neck, but rather the type that had the clip that allowed the wearer to clip it over each ear. I pulled the earpieces off of the wires and used the left earpiece (Marni's NG Tube was in her left nostril). I taped the tube to the earphone so that she wore it hooked over her ear. That way it didn't have to be taped to her face and it didn't hang either. She sometimes used a tiny piece of tape on her cheek to help it stay put, but usually just having it taped to the earpiece worked, even at night while she slept since back then she was on feeds 24/7 with the infinity pump.

I think something like an old blue tooth earpiece might work well, also. I hope this helps!

Stacey
 
Sure, I'd like to see the picture.

We've got all the stuff now, and tomorrow we go to the hospital for Jae to get started on EEN. Tonight she got her choice of her "last supper" which she chose steak, corn and fried beets. She seems to be doing well today and she isn't having a lot of pain, even after eating that! She also had a 3 scoop of icecream Ensure shake earlier in the day without pain. I'm hoping that after all this EEN, she'll be plump and painless and have a good appetite like I've never seen in her before :) .
 
Wow, that's some meal for someone with IBD, LOL. I'm sure that after she ate it and seemed to do alright, you questioned whether she needs to be on EEN afterall. But, just when you think, "Maybe we don't need to do this," BAM, pain again or diarrhea, or both, confirming that it's worth trying to give her the bowel rest.

Marni has been on the fees at night while she sleeps for over a year now. Occasionally, like tonight, she begs to be allowed to skip it and sleep untethered to the pump. I gave in tonight and let her skip it.

I'll look to see if I have a photo of her earpiece that I made, but since your child is a girl, another way to do it is to use a plastic headband and tape the tube to the headband instead of her face. This didn't work for Marni because although she wears a headband all the time to keep her hair back, she plays with it alot and takes it off and puts it back on all the time. That wouldn't have worked if the tube had been attached to it.

Good luck tomorrow. She'll do fine because it sounds like she's on board with this. I didn't catch her age, but Marni was about to turn 9 when we tried the no-food approach. She was NOT on board with it, and thus, as I decribed, she was very depressed about it. It was so hard to see her that way.

Keep us posted on how she does tomorrow!
 
Ugh! We have not got off to a good start. We're here at the hospital and they've checked Jae in. They brought an NG tube to try to place it. It did not go well. They brought in a tube with a weighted end so that it could be xrayed for placement. The nurses couldn't get it in past her nose and it hurt a lot. This was very traumatic for Jaedyn and made her cry. Now she is scared and we are waiting for another NG tube to be brought up from Seattle or Anchorage by plane!! Gotta love rural living - NOT! :ack::(

Now we're all wondering if we've made the right decision...
 
Poor girl!!! I can imagine she's scared to try it again!

Here is a link to a young girl demonstrating the insertion of the tube. Seeing it being done and hearing a young girl explain it might help. Keep in mind, her demo is very precise so seems to take a long time; within a week, it was taking my son less than 10 seconds to do it.

http://www.youtube.com/watch?v=YJIFOCbPTjo


My experience is certainly limited compared to that of a nurses who's done it lots of times (I've only gone through the 'learning' of the insertion once with my son) but...

- be sure the tube is infant size (my son is 5'10", 165 lbs - if it's worked for him for a year, it'll work for your daughter).
- some people have an easier time inserting through one nostril instead of the other - my son ALWAYS uses the left side, says it's harder on the right.
- your daughter may think it's easier to have the nurse do it but I think if she does it on her own, she can feel if it's going too fast or is feeling uncomfortable. When my son was taught (but he was already 16), the nurse had him do it on his own from the very first time... she just talked him through it.
- (I'm only going by what my son has said but) the hardest part is getting past the gag reflex, 'swallowing' the tube with the water helps and I told my son to visualize how small the tube was compared to the size of bite of food that he normally swallows.

HOpe some of this might help! :ghug:
 
Thanks Tess. I wish I could dictate more to the staff here! They are definitely making it harder here than it has to be. I mentioned about her doing it herself, but they didn't want her to with the type of tube they were trying to put in... :(. I am going to show the nurse that video clip...
 
I hope the clip helps. Let Jaedyn know that it truly only takes Stephen seconds to get it done now, doesn't even use the gel nor the water anymore. (Also the tape... my son uses a quarter of the size! :))

I hope it goes easier for her next try...
 
I'm sorry she had such a rough time, hope it all gets worked out so she can get all those much needed calories.
 
Oh no! I'm sorry to hear the first attempt didn't go well. We did not ever use a weighted tube. Our tubes came with a wire inside of them that we were instructed to remove before insertion. The tube was very small and floppy, very much like a piece of spaghetti.

An x-ray to check for placement sounds like overkill. We just got my son to eat a colored Popsicle and then checked to see that the fluid we pulled out of the tube was the same color. From what I hear you will know if the tube went into their lungs as they would be coughing up a storm.

These are my son's words of advice...

"Take it slow and don't push too hard. When it stops at the back of your nose just move it around a bit to find the turn. Don't worry you can do it."

I too think it is better if they try to insert it themselves as they can feel what is going on. Once it is in a Popsicle might be good to numb the throat. My son quickly got used to the feeling of the tube in his throat but it was a bit annoying at first.

:hang:
 
Four attempts now without success. Jaedyn is scared and says it hurts too much and wants to go home. She did the last two by herself and it went much better, but then she started to throw up and gag and the water didn't help so she pulled it out. Now she says her nose hurts too much when she tries and she "knows" this isn't the right treatment for her. I'm so discouraged and sad. I guess I had a reason to be anxious about today. This is not going as well as I had hoped :(
 
Why are you using a tube in someone who can eat steak?
 
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She has her good days and bad, but the good days aren't meeting her nutritional needs. She is 62" tall and 70 lbs at 13.5 years, pubertally delayed.
 
Just my opinon here but I have been underweight, severely (I was 36kg as a young adult and I'm reasonably tall) 16 years old. I'm twice that now.

If there are weight issues the easiest thing is not to mess around with tubes but to give nutritional IV or sporadic glucose IV.

Reading the story is pretty weird to me, tubes are supposed to be used for people with upper gastro issues, you're talking people who can not eat because of issues before the duodenum, or people who have internal bleedings and can not eat. The fact they consider X-rays in a child who does not have upper gastro issues is very weird for me reading it.

Well, just my 2 cents, if she can eat a steak I do not understand why she can not drink EN, tubes are used in little children who refuse to eat or people who have upper gastro surgery / bleeding and who can for some reason not get intravenous feeding, it shouldn't be used in people who can eat or are willing to eat. And severe malnutrition needs to be corrected with IV, not with EN. I do not understand why she can eat whole meals but needs tube feeding, that is all. Tube feeding is not easy on most people when they already have crohn's disease, only when they have upper gastro issues (which most people with crohn's disease do not have) should you put a child trough tube feeding and since she can eat whole foods I do not understand the motivation to use tube feeding.
 
Kiny, I'm tired. I've had a rough day. I'm on here for support. This is a thread about EEN. If you don't understand the uses of EEN in Crohn's disease for underweight adolescents, please go read up on it. EEN can bring about remission without the use of prednisone and the heavy drugs. That is our alternative we've been given. We started this journey because my daughter is skin and bones. We didn't ask to be diagnosed with Crohn's and just because she doesn't fit your picture of what a Crohn's child should look or act like because she was able to eat steak the night before, doesn't mean that I want you attacking me for what we're trying to do here. Please back off. We've been trying to do it without the tube. She can't drink more than 2-3 a day. She hasn't gained even with the supplemental. I haven't asked you to be Jaedyn's doctor, and I don't want your criticism right now.
 
For anyone who cares, Jae has refused to try any more and we're still sitting here at square one. I'm hoping when she has had a good night's sleep tomorrow that she'll be willing to try again, but if not our choices will be to have her intubated under full conscious sedation or give up and try to drink it exclusively without the NG tube. It's been a long day, about midnight here and I'm going to bed.

Sorry that I was snappy at you, Kiny. I shouldn't expect a 16 year old to understand. I'm just tired.
 
I do understand why you want to continue trying en and completely understand not wanting to use pred.

It can have some really bad side effects.

Pred can also be good. I don't like that my daughter is currently doing her third course. But it did give her life back.

Sarah was 44kg (97 pound) at dx, she is 5ft 8, she losted 12kg in 2 months prior to dx. She gain back a kilogram a week with use of pred and two serves of ensure a day. Twelve months on she is 60kgs.

If we had a choice at the moment I would like to try en but have to do this current of pred to fail steroids, as step one of the qualifying process for remicade.

Best wishes with what ever you decide. None of these decisions are easy.
 
Of course your tired. I remember falling into bed mentally exhausted the day Grace had hers put in. Hers (Grace) went fine, so I can Imagen your day.

Some kids can drink it all. MLP's boy did it.

Get rest and start again. We're here for ya!
 
I'm so sorry you and Jaedyn have had such a rough time with this. She's 13, so she has a choice in the matter. However, she's severely underweight so the choice seems to be as you said, drink it or have an ng.

Can you help her remember how she accomplished something in the past that was at first really difficult for her? Ask her how she managed to overcome the obstacles? Let her tell you all the details. This type of questioning (coaching) can help her see how strong and resourceful she is, and that even if at first the ng seems impossibly difficult, she can figure it out and do it. This is different from telling her, "you can do it", cause that tends to lead to "Oh no I can't".

If the choice is really hers, you can help her do a decisional balance exercise, where she writes or tells you the good things and the bads things about the status quo (not having an ng) and the good and the bad things about having an ng. This can be very helpful in clarifying one's thinking.

Sending positive thoughts to you in Alaska! Hope it goes better after some sleep.
 
Carol, are they using a SMALL 6 or 8fr tube?
If not, request one. They may be using a tube that is too large for her to comfortably insert.
Has she tried BOTH nostrils? Violet CANNOT insert through her L nostril, simply cannot do it. Her R nostril goes in like a charm.

At 70lbs she NEEDS the formula.
I recall V's doc mentioning a PEG tube if she couldn't deal with the NG long term, he was THAT sure of the efficacy of formula feeds for these kids. Many, many of then are underdeveloped and undernourished, I saw them when V went to IBD camp. Skinny, waiflike, no secondary sex characteristics...stick figures. I shuddered to see it.
Undernutrition and delayed development was/is something I refuse(d) to accept even though many parents of IBD kids seem to live with it rather than tube feed. I cannot understand that mentality.

You are doing the RIGHT THING by making her accept the feeds. When her figure starts developing and she fills out, when she no longer feels like a little kid next to her schoolmates and feels confident in a bathing suit, when she has energy and healthy color and shiny hair you'll know it was worth the aggravation now. Look at V's photos on my profile and show them to her, and feel free to PM me and maybe we can get her and V in touch.
 
Thanks everyone. It's still early here, but I'm finding it hard to sleep. Jae doesn't seem to have any problem sleeping, for which I am thankful. We'll see how it goes. If she is still adamant about not having the tube, I think I'm not going to push for sedation. We'll try it orally. That may be the best option, and we can always revisit the tube solution if it doesn't.
 
CarolinAlaska said:
Kiny, I'm tired. I've had a rough day. I'm on here for support. This is a thread about EEN. If you don't understand the uses of EEN in Crohn's disease for underweight adolescents, please go read up on it. EEN can bring about remission without the use of prednisone and the heavy drugs. That is our alternative we've been given. Please back off. We've been trying to do it without the tube. She can't drink more than 2-3 a day. She hasn't gained even with the supplemental. I haven't asked you to be Jaedyn's doctor, and I don't want your criticism right now.
Click to expand...

I have been on EEN and TPN for years, I administered it to other people.

Regarding remission, I'm the one who showed the study that proposed that it helped for crohn's disease. The study did not use a big double blind trial, spontanuous remission is high in people with disease onset. The reason for remission with EN is not related to how EN is administered, it might be related to the low bacterial content which lowers antigen response, the medium chain triglycerates they put into EN which help lymph drainage or the modulation of gut flora because of the low fiber content which lowers fermentation. I do not believe there is strong evidence that EN helps to control crohn's disease, I talked to the people who wrote the study and they agree that it would take large double blind studies to prove it has any merit for crohn's disease. The study had many flaws to begin with.

When you start taking X-rays of children who have no upper gastro issues to place a tube you might want to reconsider how much value you are putting on something that has never been consistently shown to induce remission. You should be taking advice at that point, because that's not how you treat someone with crohn's disease. People cling onto single studies about EN which I now regret posting at all, since they completely misinterpret them, a single study is a single study, most studies you read about EN will be positive simply because that's how peer review works, positive studies tend to make it easier to receive grants, the truth is that no one knows if EN works for crohn's disease at all. And no, EN is not a replacement for prednisone or other drugs, I know clinics in the US tend to be private and doctors are far more lenient towards parents, but the action of EN will be something that will be useless in acute cases, since modulatoin of the gut flora or lowering fecal antigen response is something that will take much longer than prednisone or other drugs, EN could make the disease much worse if it's used in acute cases over drugs.

And no, I didn't reply to be rude, I replied because I have lived with this disease longer than most on this forum, because I was severely underweight and managed to overcome it and spent time in clinics helping other people do the same thing. I am not telling you what to do, I just gave advice, if you don't want to take advice then so bed it, remind me not to reply again to any threads of yours. You are welcome to do what and how you like and if you think you are correct and believe in it then do what you like, it's a free world and I hope she gets better.
 
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Carol, I haven't read everything but wanted to say O was deathly afraid of the tube. The threat of the tube was all she needed to convince her to drink her Ensure and Boost. If she can get a couple down a day, this whole experience may be just what she needed to psych herself up for getting the rest of the cans down.

I am so sorry it has been so traumatic for you both. I do agree formula is what she needs even if just supplemental. Poor pumpkin!
 
I don't have much to add but I wanted to offer my support. My son spent the last part of 2012 on an NG tube and he had trouble with the first attempts of placement. For him it was the 3rd try that worked. Pray things go better today.
 
Hope this all works out for you, Carol. I know that EEN was amazing for my son - in the last 6 weeks of the 12 week time he was on it, he felt better than he had in a long time (and likely has not felt that good since). He gained about 25 pounds and all his symptoms disappeared, he got colour back in his face and lots of energy.
Now, that being said, he really found the insertion of the tube uncomfortable and he chose to keep the tube in all of the time rather than taking it in and out (just tucked it behind his ear and in his shirt when not in use). It needed to be changed every 4 weeks (so 3 insertions total for his 12 weeks). The nurse got him to drink a lot of water through a straw as she fed it in - it seemed that once it got past the back of his nose, it swam its way down without much more problem. It was just that first part that seemed to be difficult. One nostril seemed easier to do than the other.
He always found it uncomfortable for the first half day or so after the tube was put in - that feeling like he was going to gag - he could feel it at the back of his throat but it went away once he got used to it and he couldn't feel it at all. He always tried to sleep through that first part. A couple times, just adjusting the angle that the tube came out of his nose made it more comfortable (ie, a little more slack?).
But... despite that discomfort, if you asked him today, he'd definitely say it was worth it! Good luck!
 
Not sure if this is even vaguely relevant, but have they checked her adenoids?
As a kid I was a total mouth breather, as I had enlarged adenoids. I seriously suspect that if someone had tried to put a tube down my nose before I had my adenoids removed it would have been a total failure.
 
Carol,
This makes me cry, I feel so bad for you both. I think you are doing the right thing! We have tried everything for the last three years to put weight on Jack and it looks like disease wise he is. Which is great. However he is not just severely underweight but dangerously so to the point where they are worried about his internal organs just like someone with severe anorexia, so we sat him down with his doctor yesterday and explained to him his options either he drink it or we do a NG tube. He has chosen to try drinking at this point so we went in this morning and spoke to the school nurse, loaded her fridge with Boost and set a time schedule for when he is to fill up his thermos, I hope it works and he follows it and we don't have to do an NG tube but if it comes to it I will not hesitate!
I'm sure you feel the same looking at your child and watching them waste away you are not going to stand by but do something about it and choose to give them the healthiest childhood that you can and yes EEN works, we have heard from so many parents here that have had success with it.
Why should we sit around and hope that everything works out in the future and they grow to their full height and weight, how is their body supposed to fight when they are so severely lacking in reserves.
I hope it all goes well today and can certainly understand the anxiety and the "I'm not doing it" of a 13.5 year old. Stay strong and update us when you can and go have yourself a good cry in private when you can. I certainly was bawling in the shower last night because I wanted easy answers yesterday and did not get them.
 
Oh gosh. I hate the she had such a rough time with the tube. I can completely understand her not wanting to try again. Maybe she'll drink it instead since she doesn't want to do the tube???

I'm glad she was able to get some rest. Hope you got some too.
 
I've been thinking of you and your daughter all day. I hope today has gone smoother. It is such a hard thing as a parent to navigate this very uncertain path with our kids.

:hang: you will find the right solution.
 
Almost forgot. Have you tried bribery? It is not something I normally do but I pulled out all stops while my son was on EEN. This is why I now have a 50 gallon fish tank with piranhas. :ywow:
 
^^^^ yeah that
DS made alot of cash from us and the inlaws while on EEN
He does not get any money for just en.
We had tears threats of vomiting for a week.
I had to plug his nose daily and sit beside him threatening a tube with every sip.
This was over thanksgiving weekend :(
You will get there it just takes time .
 
So a quick update. Jae is opting to drink the EEN. She will drink it exclusively. She does have a bribe, which started with the NG, but will hold for drinking it too. For each of the 8 weeks she drinks it exclusively she'll get $12.50. If she finishes the entire 8 weeks she'll have earned $100. It will be worth every penny to me, and to her if she gains weight and her health. Now she also has the added motivation that if she doesn't drink it, back to the hospital we'll go to get that tube put in... :(. I have a real appreciate for all those kids who have done it before now. Frankly, I would rather drink the stuff myself than have that tube in my nose all the time, but on the other hand the smell of Ensure makes me gag! I'm glad Jae can do it. One day at a time!

Thanks again everyone. I really appreciate all the encouragement.

Kiny, again, I say I'm sorry I overreacted. If I hadn't been in the thick of it and exhausted, I might have had eyes to read and try to understand what you were trying to say.
 
I'm sorry Jae (and you) have been through so much. Praying things start settling down for you all. :hug:
 
She and Jack will both be drinking them, well his GI just gave him a bunch of samples of different flavored Peptide so here's to hoping they both gain some much needed weight soon
 
Jmrogers4 said:
She and Jack will both be drinking them, well his GI just gave him a bunch of samples of different flavored Peptide so here's to hoping they both gain some much needed weight soon
Click to expand...

:beerchug: Here, here! I hope your son can find one or more that he enjoys drinking. Jaedyn met her goal to day of 5 Ensures. Tomorrow it will be six! :ytongue:
 
Brilliant. Now she knows that she can do it. Hopefully that knowledge will make things go much more smoothly from now on.
 
He drank one of the peptide last night but had 5 Boost prior to that. Had one Peptide this morning and took 4 Boosts with him to school so we will work in 2-3 more this evening. I know we can get a least 2 in, one when he gets home from school and one before bed. He definitely thinks the Boost tastes great now compared to the Peptide but he is drinking it and the nurse has a little check off to make sure he comes in and gets more during the day. We have set up a timetable with her, he takes one in his thermos in the morning and goes in at morning break, lunch and between 6-7th period and gets more and I think once he gets used to drinking him he will be fine as will Jaedyn. Can't wait for their faces and bodies to fill out and not look so gaunt. Here's to 6 for her today! Go Jaedyn Go! (That is my little cheer)
 
Yep, finished 6 today. :ybiggrin: Tomorrow will be seven! Sounds like Jack is doing great too. She isn't pooping much though. She says she just doesn't need to as opposed to feeling constipated. What is the norm with that?
 
When my son did the exclusive EN, he had diarrhea (no urgency though) throughout the six weeks (it had been one of his symptoms prior to diagnosis). Our dietitien had given us the heads up, saying that this could happen (liquid in, liquid out) and not to worry if this was the case (assuming all other symptoms were improving).

However, from the experiences I've read here, not everyone reacts to the formula feeds the same way... it may just take her body a couple of days to adjust...
 
Have just looked through some of these threads, maybe this IS something Jaime needs to consider. I know she is older than your guys.

She has tried drinking the ensures when she is unwell with no success.

If it goes directly to her stomach via a tube will it definitely stay down?

As she is on Pred right now she should be okay for a while, but will be speaking to her dietician if she becomes very unwell again.
 
I'm not sure if having the formula/Ensure through the tube would make a difference re nausea??? But, some thoughts...

It may be easier to control the amount being ingested (the rate of feed can be adjusted on the pump). Perhaps a very slow, continuous feed would be easier on her stomach??? Also, most drink the formula cold due to it's flavour; the cold can be harder on the stomach, ingesting it through the tube would eliminate the flavour aspect and could then be ingested at room temperature. She could also try some of the more easily absorbed formulas (I think they are peptide based??? Is that right, my little penguin ??) because, again, flavour wouldn't be an issue.

Was she ever tube fed while in the hospital? If yes, how was that?
 
No never! Only IV fluids. It is certainly worth a shot. But she may never get that bad again!!! Well can only hope :ytongue:
 
Jack is drinking the Peptide and yes both the Boost and Ensure taste better. From my understanding the proteins are further broken down to make them easier to absorb which is why he told us last night Peptide exclusively for the first month and then we would reasess.

Carol - No poop here yet either :( but then he has rarely been an every day poo-er. We did warn him it would most likely be diarrhea though.

Niks - If you did get her on an NG tube it would certainly relieve some of your worries about nutrition and eating you could at least be ensured she was getting enough.
 
Niks said:
If it goes directly to her stomach via a tube will it definitely stay down?

As she is on Pred right now she should be okay for a while, but will be speaking to her dietician if she becomes very unwell again.
Click to expand...

Not definitely, but more likely. It can be given slower so her tummy doesn't feel it as much. If she is barfing sips of water, this probably wouldn't help, but if she is keeping some foods for about an hour, this might be able to slip by...

There is also a tube feeding that is called an NJ tube (just learned of it) that goes through the stomach into the jejunem (first part of the small bowel). Little harder to get in place, but could help with the nausea aspect as it wouldn't go into the stomach. Perhaps then she couldn't bring it back up...

:heart:Carol
 
Carol,
I'm sorry to hear it didn't go well. I can't believe they only had ONE tube with them. They should have had at least a few different sizes. Your story reminded me about when Marni got her NG tube. It didn't go well either. It took four or five nurses to hold her down and get the tube in while she fought the whole time....violently...like I've never seen her fight before. I left the room until it was over because it was upsetting, but I let them do what they had to do to get it in.

She threatened to pull it out on numerous occasions at first, but I just reminded her that, if she did, we'd have to go back to the hospital to get it replaced. That was enough for her and she left it alone after that.

After three months with the NG Tube, we changed to a G-Tube which she still has....for almost a year now. Keep me posted, please.
Stacey
 
Thanks, MM. That was one option - putting it in against her will. It was a decision I had to make. I think Jae had to try this option first to see if she could do it. So far, she is doing it. It is taking a lot of reminders, but she's doing the drinking and not fighting it. She's been on 7 cans a day orally for the past 3 days. I know we have a long way to go, and she understands that if it gets to the point where she can't do it, we'll have to readdress the NG tube option. Her doctor also offered conscious sedation, and her peds GI doc offered to bring her up to Anchorage to try it there. Right now we're doing this and the ball is in Jaedyn's hands. I just keep remembering that Jaedyn and I had a conversation before she went in to see the peds GI that I wouldn't force her to do anything she didn't want to do. She made the choice to do the testing and go through the hard stuff. Now that we're where we are at, I am choosing to be patient with her and letting her try to do what she can. If she were dying or severely hurting herself, I might have to change my mind on this, but right now this seems the best and she's growing up and making these hard choices. At this point everything about her illness seems so grey. Even the doctors think so. I don't know if we're making any of the right choices, but I have to trust that God is helping us to go the right way and that we're not just making things worse.
 
Carol,
Seven Boost per day is insufficient by far for the degree of nutritional deficit/developmental delay/weight loss that needs correction in this case.

Violet was given twelve cans of formula per day for three months, then scaled back until she now gets half that.
Her GI said 3000 cals MINIMUM to fix deficit and gain/grow.
Drinking that many cans/bottles of unpleasant tasting formula is too hard, and introducing it into the stomach at a LOW RATE via feeding pump greatly reduces nausea and INCREASES likelihood of it being absorbed.

I think a child who is as underweight and pubertally delayed as you describe your dear girl as being, needs max nutrition and I am always baffled by mothers who hesitate to enforce this treatment, thereby denying the child the chance to regain severe delay in multiple areas.
Violet was given NO CHOICE. She was sedated for the insertion. She kept the tube in 24/7 for 3 mos and then started removing and inserting it herself.
I could not look at a child of mine every day who looked like a stick figure. Could not do it.
 
We're doing 7 cans a day because that is what her doctor told us to do. It was figured by the nutritionist too. If she was told to drink more, she would do it. It may come to that. I'm not depriving her.
 
I realize that was what you were told to do.
I know more than one mom on here had their child at a much lower dose of EEN then the rest of us only to increase it later.
Please look in to my fitness pal or other website for calorie content for children.
DS was on 1750 a day at 50 lbs and 7 years old ( 7 cans a day)
The fact she is drinking is great.
There is a paper in research section ( peds )
That state reccomended calories for EEN is higher for crohn's kids than normal kids so if your doc is not used to placing kids on EEN that may be why.
We all know you are doing the best with the info you have .
Just want to make the EEN worth it for her .
Hugs
 
Jack was prescribed 8 cans a day which today will probably be the first day we achieve that since he has been sipping and it was taking about 2 hours to finish 1 UGG!! I think has has gotten used to the taste now because last night he drank 2 of them in an hour time frame and was using regular size mouthfuls, not chugging it but not sipping it either.
Curious Carol, are you weighing her daily? We put a white board up in the bathroom near the scale and we have been weighing and recording weight on it every night. Day of scopes he was 77.8 on hospital scale 81.4 on our home scale last 4 nights skipping Saturday because we didn't weigh him. 83.6, 83.4 and last night 84. I think it is encouraging him to drink them.
We have appt on April 10 to check status and see if we maintain current regiment or get to adjust based on what has happened in the meantime.
Does Jaedyn have a flavor she prefers? Jack says strawberry is the best tasting to him.
 
Not to sound like an ass, but they are not giving her enough and sadly, MANY US GIs and nutritionists are not familiar enough with PROPER use of EN as they are in Europe, Japan, and the Netherlands where our GI tells us it is FIRST LINE rather than last resort as it is viewed by many here in USA.

Seven Boost may maintain her at current weight. It won't correct deficit.
3000 PLUS cals of absorbable formula (more broken down than Boost) is what will give her maximum chance to gain and grow. This is from V's GI who consults regularly with IBD gurus and is considered kind of an expert on nutrition himself, by those in the field.
 
Jaqui
One thing to keep in mind with your sons 8 a day is he is permitted food so weight gain is much easier and calories are alot greater when doing the combo .
 
Jack's is supplemental not EEN but that may explain why he said Peptide when I said it was awful expensive to him that we needed to do Peptide for 6 weeks then we would talk about Boost. Thanks imaboveitall, I know GI was worried about absorbtion.
We have been keeping a food diary as well so he is averaging around 1400-1500 calories from food that he has eaten and with 8 Peptide an additional 1896 calories so 3296-3396 calories a day. I'm seeing some color come back into his face. Not a ton of energy yet but we are not having crying fits over being too tired to do homework.
 
I've had concerns over whether she is getting enough. She will be doing weekly weight checks with her pediatrician, first one tomorrow. We can adjust amount of nutrition/type of nutrition accordingly. I know they were also concerned about "refeeding syndrome" as we started her on this. They are using NAPHSAT (or something like that) guidelines for EEN.

Thanks for your imput.
 
Carol, just in case you aren't aware of this... there are also Boost Plus shakes which provide 1.5 cal/mg rather than 1 cal/mg. If you do decide to increase Jaedyn calories, it might be easier to switch shakes rather than increase the number of shakes.

But, just a heads up, Stephen normally ingests his formula (Tolerex) through NG but, when we were away, I took Boost Plus and regular Boost with us... he didn't have a problem drinking either shake but I know others here have said the 1.5 formulation is thicker and tougher to drink...

FWIW, Stephen, too, was put on 3000 cal per day when doing EEN, however, he was 16 years old. But, even at 3000 cal/day and having lost 25 lbs prior to dx, he only gained about 10 lbs during the six weeks (6 lbs in the first two weeks and then only 4 more pounds). Dietitien thought it was due to his activity level - but she wasn't ready to increase the calories as long as he wasn't losing weight. However, to really gain weight, he needed more than the 3000 cal/day - once he was back to a regular diet (and responding to hunger cues) PLUS keeping EN supplement (1500 cal/night, 5 times per week), he gained another 20 lbs over the next 6 weeks.

Just for interest purposes, I've attached a copy of a report re EN given to us when Stephen was initially diagnosed (I skimmed to see if it gave recommended amounts but don't believe it does, so just for interest...)

View attachment Griffiths 2006.pdf
 
Yeah we tried the 1.5 calorie ones and Jack said they were like drinking pudding, put it in the blender and frapped it up and it was like a milkshake and he drank it that way.
Thanks for the report Tesscorm. We are on our last day of samples so I just called GI to tell him DME company has not called and to get the number - hoping he either gets me more samples or okay's Boost for a day or so until we can get the Peptide.
 
CarolinAlaska
I think you must be referring to the guidelines in this paper http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf by The North American Society For Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN). It details how to calculate a starting amount of calories + add calories for activity level but also states "After commencement of EEN, the child’s nutritional status needs to be re-evaluated regularly and adjusted as required. Hunger and/or poor weight gain are common indications to increase the prescribed daily volume."
 
Thanks MLP and xmdmom I haven't seen either one, they are very helpful and informative for me. I suppose I should do some more research so I know when to call or what I should expect from appt. in April for check in.
 
BACKGROUND: Enteral nutrition (EN) is widely used and is effective in the treatment of children with Crohn's disease given as an exclusive feed for 6-8 weeks. Current dietetic practice during EN is to recommend an energy intake based on estimated average requirement (EAR) for energy for age.

AIMS: To examine factors affecting energy intake and weight gain during EN in relation to disease site and nutritional status.

METHODS: A retrospective cohort study examining energy intake and weight gain during the exclusive EN feeding period in 40 patients newly diagnosed with Crohn's in relation to EAR, nutritional status, disease site.

RESULTS: All patients improved clinically and gained weight during EN with improvement in the CRP as a marker of the systemic inflammatory response. Energy intake was higher than EAR in 82% (33/40 patients), with the median 117.5% of EAR. Weight gain correlated with body mass index standard deviation score (P = 0.001) at start of treatment, but not energy intake or CRP.

CONCLUSION: Estimated average requirement underestimates energy intakes in most children with newly diagnosed Crohn's disease. During EN, an energy intake in the range of 100-149% (median 117.5%) EAR for energy for age may be required. Energy balance studies in children with active disease are required.
Click to expand...

From:
http://www.ncbi.nlm.nih.gov/m/pubmed/16150129/


Energy intakes of children with Crohn's disease treated with enteral nutrition as primary therapy.


 
Malnutrition is very common in Crohn's disease. In fact, Crohn's disease patients appear to burn fat calories at a higher rate than the general population and most patients are underweight. Some experts recommend that children with IBD increase their calorie and protein intake by 150% of the daily recommended allowance for their specific ages and heights. Studies indicate that nutritional support in children is as important as medications for achieving remission. People whose weights are normal or no less than 90% of normal do not need to add extra calories.
Click to expand...


From:
http://adam.about.net/reports/000103_6.htm
 
She had a rough night. She is a little depressed and tired. School isn't getting done adequately and we had a talk about this, which I think upset her more. Today we woke her up and brought her to the doctor for her first week checkup. She has gained 1 lb 6 oz. That is even with 2 of the days being less than 7 cans. We are getting the nutritionist involved more with adjusting her caloric needs and fluid needs. She is having more stools, and they are not formed. Yesterday she had more GI upset, but not really pain. It is so hard seeing her down, and I know it is my hypervigilance, but I can't help being pulled down with her. I've sent her home with her daddy with the recommendation to get the diffuser going with her favorite oils to perk her up while she is doing school. I hope it helps.
 
That is great that she has gained weight! Understand the school thing, I had to take Jack's ipod away until he got caught up with school work. I think he was feeling a little overwhelmed by it all and would rather play on his ipod then do work (who wouldn't) Told him he had to do whatever was due tomorrow and 1-2 other things from the list of missed work. His algebra teacher says he doesn't have to do all the homework if we feel he has the concept down we can just sign off on it but he has to do at least a few to show us he does know how to do it which will help and I think he felt better after I told him that.
Love to have scents going in the house!
Yep, we are having daily BM's compared to 1 every 2-3 days prior, I think because he actually has stuff in him now to form stools. We are 3 pounds since last Tuesday :) He was dancing around the family room in his underwear after weigh in last night singing "I got a belly!" and rubbing his belly. Of course you could still see every rib but it's a start and it was very funny
 
Hmmm Carol... I am going to sound like I am talking out both sides of my mouth here but.....

My daughter was very, very small at dx. Gained 10 pounds on prednisone and then went to EEN. She runs school track 3 days a week and swim 5 days a week 2 hours a day. She was put on 6-8 cans. There was no way I believed that was enough. NO WAY! Haha and neither did the committee. We still don't! I tried to get extra in her at every turn. However, I did read an article with a formula for figuring out caloric needs on EEN somewhere that justified his 6-8 cans (and that was taking into account her activity level). Still didn't believe it. Was able to get O up to 8-9 cans a day.

Anyway, the end result was EEN worked with getting the inflammation under control AND she gained another 10 pounds. Go figure. And grew 4 inches!

I think early weight gain was slow going for a couple of reasons...lingering inflammation which affected absorbtion and since we were using Boost and Ensure a less broken down version even less was being absorbed and like you said lower intake at first.

She is still small 4th percentile for BMI(I am barely 5th percentile) but we are working on it. Another 1.5 pounds and she will no longer be "technically" anorexic. I would like another 6 or 7!

Guess what I am trying to say is I agree she probably needs more but sometimes we have to trust the docs and against all our instincts things still turn out o.k..

Congrats on the gain so far and give J my congrats on being so darned determined! She is doing a great job. Definitely not something I could do!

Oh and btw - good job mama letting her have some control. Teens need control and this disease takes so much of that out of their hands. I think letting them participate in the decisions helps a bit and it sounds like you have a good handle on when you need to take control. J will thank you for this later...trust me!

Good Luck!
 
After the doctor appt, Jae ended up perking up and doing her schoolwork. HOWEVER, her daddy reports that every hour when she had to drink an Ensure she had abdominal pain and had to go lay down. No diarrhea but she had about 4 crampy stools that she describes as looking like worms (the poop is in little strings, not actual worms). She, for the first time, did not get her last can done by bedtime, and I am having to go back in there every 30-60 minutes to try to get her to drink some more to finish it up.

Do you think that it could be that she isn't tolerating the Ensure? This is about the 5th day of having GI issues of the 7 days we've been on the Ensure full-time, or how long do we figure she needs to adjust to this? She didn't have daily problems before the full-time Ensure although she drank about 2-3 cans a day prior to this past week for the previous month, and her stools were 2 formed stools daily prior to the EEN...
 
Hmm hard to say. Could be the liquid in liquid out thing but the cramps would bother me. I would call just to check on it. Could be a switch in formula would be more tolerable for her system...unfortuantely not her taste buds:(
 
Carol, I am again butting in but I would request a peptide or amino acid based formula.
Violet could NOT tolerate Pediasure (similar composition as Boost and Ensure), it made her gut worse.
You want max absorption. A more broken down formula and lots more of it is what that poor kid needs.
 

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