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Crohn's Disease Forum » Parents of Kids with IBD » Adolescents and Teens using EEN


 
02-01-2013, 06:35 PM   #1
CarolinAlaska
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Adolescents and Teens using EEN

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.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-01-2013, 06:40 PM   #2
Farmwife
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Thanks for posting your journey.

Do you know what drink she will be on?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
02-01-2013, 06:50 PM   #3
CarolinAlaska
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Thanks for posting your journey.

Do you know what drink she will be on?
Ensure.
02-02-2013, 12:19 AM   #4
Devynnsmom
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I have no advice or experience, but I wanted to say good luck!
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
02-02-2013, 02:51 AM   #5
Patricia56
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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/northwe...amp-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.
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
02-02-2013, 03:02 AM   #6
CarolinAlaska
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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.
02-02-2013, 03:11 AM   #7
Patricia56
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how old is she?
02-02-2013, 03:16 AM   #8
CarolinAlaska
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how old is she?
13, will be 14 in May...
02-02-2013, 03:35 AM   #9
Patricia56
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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.
02-02-2013, 03:45 AM   #10
CarolinAlaska
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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.
02-02-2013, 04:23 AM   #11
Patricia56
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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.
02-02-2013, 05:19 AM   #12
Sascot
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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!
02-02-2013, 06:45 AM   #13
imaboveitall
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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.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
02-02-2013, 07:24 PM   #14
Jmrogers4
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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
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-02-2013, 08:04 PM   #15
CarolinAlaska
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I actually have the link. We will try to make it happen.
02-02-2013, 08:23 PM   #16
CarolinAlaska
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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?
02-02-2013, 09:12 PM   #17
my little penguin
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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
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02-04-2013, 02:38 AM   #18
Marni's mom
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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
02-04-2013, 12:50 PM   #19
CarolinAlaska
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Could someone list all the supplies she needs for EEN?

Last edited by CarolinAlaska; 02-04-2013 at 03:18 PM.
02-04-2013, 04:41 PM   #20
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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!!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-04-2013, 07:46 PM   #21
S mom
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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!).
02-04-2013, 07:50 PM   #22
my little penguin
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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 .
02-04-2013, 08:15 PM   #23
CarolinAlaska
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Is there a special tape/adhesive for sticking NG tube to face?
02-04-2013, 08:16 PM   #24
my little penguin
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Yes
Your medical equipment company should give you the tape and face plaster
02-04-2013, 08:19 PM   #25
CarolinAlaska
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Yes, but I've heard that some kinds are better than others. I think they are planning something called something pore?
02-04-2013, 10:40 PM   #26
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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.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
02-05-2013, 01:36 AM   #27
Marni's mom
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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
02-05-2013, 01:58 AM   #28
CarolinAlaska
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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 .
02-05-2013, 02:07 AM   #29
Marni's mom
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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!
02-05-2013, 02:32 PM   #30
CarolinAlaska
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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!

Now we're all wondering if we've made the right decision...
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