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04-07-2014, 09:13 AM   #151
Tesscorm
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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.
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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
04-07-2014, 09:28 AM   #152
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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.
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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04-07-2014, 06:35 PM   #153
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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.

04-07-2014, 06:41 PM   #154
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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.
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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.
04-07-2014, 06:49 PM   #155
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Twiggy where in canada are you?

04-07-2014, 06:57 PM   #156
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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

04-07-2014, 07:25 PM   #157
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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.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-07-2014, 07:29 PM   #158
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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.

04-07-2014, 07:47 PM   #159
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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.
04-07-2014, 08:17 PM   #160
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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.

04-07-2014, 08:19 PM   #161
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FWIW my son also had Crohn's in his esophagus at the time of doing EEN.
04-08-2014, 08:33 AM   #162
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Did anyone use a pump or was it done by gravity? Thinking of time it might take. Is pump a better way to go?

04-08-2014, 08:40 AM   #163
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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.
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-08-2014, 09:32 AM   #164
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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.
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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
04-08-2014, 09:57 AM   #165
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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?
04-08-2014, 10:12 AM   #166
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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.
04-08-2014, 10:37 AM   #167
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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.
04-09-2014, 06:13 PM   #168
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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.

04-09-2014, 07:33 PM   #169
my little penguin
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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
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04-09-2014, 08:34 PM   #170
Tesscorm
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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.
04-09-2014, 09:05 PM   #171
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Thanks Tess. I will keep Trilogy in mind. I did find this on the web in case anyone reads this thread down the road with this question. http://www.health.gov.on.ca/en/publi...s/enteral.aspx explains how the Ontario government pays for it.

04-09-2014, 09:59 PM   #172
Tesscorm
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SupportiveMom - just looked up what I'd mentioned... not Trilogy, it's Trillium. Link is:

http://www.health.gov.on.ca/en/publi..._trillium.aspx
04-09-2014, 10:44 PM   #173
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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.
04-10-2014, 06:34 AM   #174
crohnsinct
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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.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-10-2014, 06:48 AM   #175
SupportiveMom
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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.

04-10-2014, 07:32 AM   #176
Tesscorm
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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.
04-10-2014, 10:33 AM   #177
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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.
04-13-2014, 02:00 PM   #178
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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
04-13-2014, 02:22 PM   #179
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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.

04-13-2014, 02:27 PM   #180
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I must of missed it, is she getting a g-tube?
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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
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