04-19-2013, 05:17 PM   #181
Farmwife
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I found getting a good relation ship with the DME people to be key.
I've stopped by there and they got to see Grace and me.
I've called before and said have you heard of this and they will check with insurance if it will be covered.
Remember the insurance company will send the "sundered kit".
BUT you can ask for things like lubricant and give a good reason why and it can get covered.
We've tried 3 different skin protecting gels that was all covered because Grace was having sores from the adhesives. Again it was covered but not until I asked.

HUGS
__________________
I'm mom to............... Little Farm Girl 9 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 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
04-19-2013, 05:23 PM   #182
LJS
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I actually have a great releationship with the home health company. Unfortunately, they checked and insurance won't cover the lubricant so I had to order my own. They did, however, swap out the pump today (ours keeps getting flow errors) and brought me 1/2" tape instead of the 1" tape they initially provided..plus the right bags! LOL
04-19-2013, 05:27 PM   #183
Farmwife
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1/2"tape? Well I'll be...I want that. I mean she's four and an inch piece of tape covers most her cheek. I so calling tomorrow THANKS

What kind of pump are you using?
04-19-2013, 05:50 PM   #184
LJS
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Kangaroo Pump. You?
04-19-2013, 05:59 PM   #185
Farmwife
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Enteralite Infinity
I love this pump because it's lite and small and Grace can carry it in her back pack along with her feeds and it's still not to heavy.
04-19-2013, 08:27 PM   #186
LJS
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yes, this one is very small. Can go in a fanny pack or on an IV pole. Since son is doing feeds at night, though, I just mount it on the IV pole.
03-16-2014, 10:35 AM   #187
crohniekid
 
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R has been on EEN for ALMOST three weeks. He is drinking Kids Essentials 1.5 and Ensure Plus Calories (his dietician gave him the ok to have a couple adult ones to mix up the flavors). He says he is feeling a lot better...BUT....I don't seem to notice a big improvement?!?! His color is a little better and energy level are a little better (but we live in Canada and it's spring...can anyone say spring fever!!!!) His mild symptoms (which were always mild) have remained...along with some new ones (like rectum pain and occasional constipation). He also hasn't gained any weight at all...but hasn't lost either. He has an MRI booked for next week and GI appointment for the week after (they were already booked to see how severe his disease its). So my questions for you guys are 1) how long before you saw results with EEN?? and 2) for those of you it didn't work for...how did you know it wasn't working???
R also just started 50mg of Imuran on Friday after his negative TB skin test.
03-16-2014, 10:41 AM   #188
Jmrogers4
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We saw symptoms abate after about 3 weeks and my son did not gain weight on it. The only time he has gained weight is when he was in remission and eating full diet along with a few shakes a day. He did not gain weight for 3 years. (although we did not do supplemental nutrition during that time) It was only when we added shakes to regular diet that he has gained.
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Jacqui

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

Husband dx Crohn's 3/1993
currently none due to liver issues
03-16-2014, 11:04 AM   #189
Clash
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We are only 5 days in on EN. C gets 7 cans a day and is following the CHOP protocol of 80-90% of intake is by EN. We are using the Ng tube. In the hospital he was total EEN since it filled him up and he wasn't hungry, so in those 4 days he gained 2.1 or 2.3 can't really remember which.

The Remicade he had the week before hospitalization had helped the stomach pain to subside but the joint pain, fatigue and such have stuck around, I guess 5 days in is too soon to determine if the EN will help with that.
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Clash
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
03-16-2014, 01:02 PM   #190
Farmwife
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my Grace didn't improve much over a month on full EEN so she had to do a round of prednisone. After the round of prednisone she was still full EEN and we were able to see big a improvement.
03-16-2014, 02:18 PM   #191
LJS
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Our protocol was similar to Clash's. My son was supposed to get about 80-85% of his nutrition at night through EN and eat whatever he wanted during the day. He gained about 5 lbs in the first 4-6 weeks, which was more than he gained in the previous 4 years! However, once he stopped or slowed down, he lost it all.. we are now on remicade and go for our third loading dose on Friday. No weight gain as of yet but his labs have been markedly improved.
03-16-2014, 06:42 PM   #192
my little penguin
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DS had EEN for 9 weeks .
His inflammatory numbers went down within a month .
He started 6-mp the same time.
His symptoms stayed though .
He eventually had to go on pred x2 and switch meds twice .
Then he gained weight. While on en as a supplement plus food on the second round of pred .
So a year after dx.
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DS - -Crohn's -Stelara -mtx
03-16-2014, 07:08 PM   #193
imaboveitall
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Violet's response to enteral feeds must be more unusual than I thought. I think (and her doc agrees) that her excellent response was due to the amount of formula she received and the type. He said she'd need 2800-3000cals and most won't go along with that regimen. Noncompliance is the issue he said. Not in my house, I replied.

At diagnosis age 10: 59lbs, (down from her normal of 78lbs) Height 55in
After 4 months on enteral: 99lbs, height 58.5in Yes, FOUR MONTHS. She hadn't grown in 9mos prior to that..
Now she is 64.5in and 156lbs

Her protocol was: 30 days 3000cals of PEPTIDE based formula plus whatever she wanted to eat. This meant being hooked to the pump 24h to get that much formula in.
Her motility was so horrible she ate almost nothing until about the sixth week or so.
Symptom resolution was fairly immediate, overall recovery maybe 90 days.

Feeds were gradually reduced and food increased until she got just 1000cals at night which she still does.
__________________
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
03-16-2014, 08:47 PM   #194
Tesscorm
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S was older than your son when diagnosed (almost 17) but his EEN protocol was 3000 cal per day, no food for six weeks.

Re weight - he had lost 20-25 lbs before diagnosis, once starting EEN, he gained 6 lbs fairly quickly and then another 4 lbs over the six weeks. Once the six weeks 'exclusive' period ended, he continued with 1000 cal/day (5 days per week) plus a regular diet - over the next six weeks, he gained another 20 lbs!! I think the slow start to the weight gain might be caused by inflammation that has not healed yet and that activity levels begin to increase as they feel better but they are on a set number of calories per day. My son also continued with the supplemental feeds for two years and, now that he's at university, still drinks 1-2 Boost shakes per day. (FWIW, when I asked his dietitien about the slow immediate weight gain, she wasn't concerned, as long as he wasn't losing weight.)

re Symptoms - my son's outward symptoms disappeared almost immediately. I'm not sure how much was due to the EEN and how much was due to a week of flagyl IV prior to commencing EEN. During the first six weeks, he did have diarrhea (however, we were told this sometimes happens as his only 'food' was liquid) and some instances of mucous, however, all his other symptoms (fever, fatigue, mouth ulcers, etc.) all disappeared.
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Tess, mom to S
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
06-28-2014, 09:17 AM   #195
crohns suffer"s mum
 
Join Date: Jun 2014
Location: adelaide, South Australia, Australia
hi my 17 year old newly diagnosed son has been on modulen feeds only for 5 weeks with one more week to go before he is to attempt small amounts of particular foods. He has been able to tolerate it orally so no nasogastric tube has been necessary. although not very happily as it doesnt taste so good. his weight before becoming ill was 6o kilos. when diagnosed he was 47 . he is now 51 kilos so we are pleased with his weight gain.
he is on azathioprine which is causing some grief but hopefully he will settle into it.
modulen has certainly been the way to better well being and we will continue a daily drink when he is eating to keep his weight up.
06-28-2014, 09:33 AM   #196
my little penguin
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The plus side is they do get used to the taste .
DS has been on peptamen jr with prebio for almost three years.
He hated it at first. Now if he gets a regular peptamen jr he turns up his nose but willingly drinks the one with prebio.
We have added different flavors to it over time
Honey maple syrup chocolate syrup etc....
Good luck
06-28-2014, 01:08 PM   #197
Tesscorm
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The elemental and semi-elemental formulas are better absorbed (ie modulen, peptamin, etc.) so, if you can keep him drinking these, all the better. However, once he is in remission and having no malabsorption issues, if he begins to balk at the shakes because of their flavour, you can try to move to the polymeric formulas such as Boost, Ensure - he'll still get his nutrients but I believe these taste better.

My son used Tolerex (elemental) thru NG tubes for two years but, once he started on remicade, I knew drinking the semi-elemental would be a tough sell (especially as the GI didn't really think they were necessary anyway ), so I compromised with Boost shakes daily.
06-29-2014, 02:17 AM   #198
crohns suffer"s mum
 
Join Date: Jun 2014
Location: adelaide, South Australia, Australia
hi my little penguin. my son hasnt enjoyed his modulen one little bit but has just got used to the taste and has become accepting of the fact that it is a necessary evil. he doesnt whinge at all (not in his nature) but will certainly be happy when its just one shake for breakfast . we add nestle quick to his but i will try the icecream topping as he is getting sick of chocolate and the strawberry quick isnt really enough to help change the taste.
thanks for the info. it is much appreciated.
06-29-2014, 11:17 AM   #199
my little penguin
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To keep DS movitated I show him all the growth charts of Ibd kids /pictures most are under 5% especially if supplements are not used .
Then I show him where he was at dx -25% and where he is now 70%.
This keeps him motivated
I also explain body builders and professional Athletes use protein drinks to improve things and his peptamen was just like that .
08-01-2014, 05:26 PM   #200
Pilgrim
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I'm going to go back and read the entire thread. We are just one week into EEN. MLP mentioned to me in another thread that we'll need med's in addition to EEN. I am wondering where that will start. Which med? How is that decided? Thanks for that MLP, by the way, just getting used to the diagnosis and didn't want any more bad news. But it's best to be prepared.
She gained two lbs (from 38 to 40lbs) in the first 3 days, but now it seems to be going backwards.
It seems like it takes 3 weeks or more to see results. So, maybe it's just a blip?
We are using polymeric formulas.
__________________
Mom to daughter,age 7, diagnosed at age 3 with Crohn's Disease and son, age 9, diagnosed at age 9 with Crohn's Disease

Current Treatment: Daughter - 40mg weekly Humira,
10mg oral Methotrexate, iron, zinc, Vitamin D.

Son - 20mg Methotrexate injections, 8 weeks EEN
08-01-2014, 06:33 PM   #201
CrohnsKidMom
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I suppose every GI does EEN and maintenance meds a little differently depending on the case. When my son was dx'd we were given the choice of Prednisone or EEN. We ended up going the Prednisone route, but had we chosen EEN, our GI would have put him on it for 3 mos with a NG tube, and no solid food. The maintenance med would have been started right away as it can take weeks/months for it to kick in. Imuran/aza takes about 3 months (I suppose 6mp is much the same), and those are often the first drugs of choice if your GI tends to use the "step-up" approach. My son was not able to tolerate Imuran, so we switched to Methotrexate injections, which kicks in a little sooner-around 6-8 weeks. Your GI may use a "top down" approach, starting with a biologic med, like Remicade or Humira. I do not have any experience with the biologics, but I believe they reach therapuetic levels rather quickly. Best of luck, and take care!
08-01-2014, 06:44 PM   #202
my little penguin
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Typically you don't gain weight when it is just EEN no food .
The weight gain comes with supplemental en plus food .
As stated above you need to start maintence meds when pred or EEN is started
Imuran/Aza/6-mp take 3-6 months to start working .
Methotrexate 6-8 weeks
Remicade 6-8 weeks
Humira 3-4 months

If you wait then you are coming off EEN and the inflammation starts to build up again before the maintenance med can keep the system calm
Most maintence meds are not strong enough to reduce inflammation that is why pred or EEN is given .
So pred/EEN reduces inflammation you stop them a week or two after starting 6-mp
Inflammation comes back and you end to start pred/EEN again.

EEN is most effective the first time it is used after that it is less effective at reducing inflammation .

The good news is you have a dx
So you can ask your gi what the plan is , what is expected to happen and what you can expect plan b to be if that doesn't happen by day xyz .


Good luck
08-02-2014, 04:22 AM   #203
crohns suffer"s mum
 
Join Date: Jun 2014
Location: adelaide, South Australia, Australia
well after a visit to the gastric surgeon on thursday, it has been decided that surgery is the best path to take for my son harry. i am not allowing him to take steroids and the doc agrees that when these can be avoided all the better especially because my son has quite bad acne and steroids will almost always exaserbate his symptoms. he spent 8 weeks on modulen only and then food introduction. he also is on azathioprine. unfortunately all this to no avail. his surgery is booked for the end of the month at the latest but more than likely in the next fortnight. we are all abit nervous but excited at the same time as this is likely to bring great relief for what we hope to be an extended period of time all being well.
thanks all for listening. this site is invaluable for venting
08-02-2014, 08:19 AM   #204
Pilgrim
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What will they remove/do during the surgery?
08-03-2014, 03:42 AM   #205
crohns suffer"s mum
 
Join Date: Jun 2014
Location: adelaide, South Australia, Australia
hi pilgrim
They are removing a small part of his small bowel.
08-04-2014, 02:21 AM   #206
crohns suffer"s mum
 
Join Date: Jun 2014
Location: adelaide, South Australia, Australia
yay surgery booked for the 19th august. i may sound a little excited which is a bit surprising considering surgery is nothing to be excited about but finally seeing a light at the end of the tunnel and fingers crossed it may just give harry an extended period of relief from his crohns.
he is also relieved and is quite ready for whats to come
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