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10-15-2012, 12:18 PM   #91
imaboveitall
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Kiny, what intelligent posts, thank you.

Formula was a lifesaver, literally, for Violet. She still uses it four years post-dx.
Her growth and development have not suffered despite constant unresolved disease and the formula is certainly why.
Malabsorption is really inevitable with this disease. The formula's nutritional availability cannot be matched via food.
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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
10-15-2012, 12:23 PM   #92
kiny
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http://www.naspghan.org/user-assets/..._Control_of.29[1].pdf

Study on different EN in children stating elemental vs polymeric did not make a significant difference in children.

This is the key children tend to do better overall on EN then adults in general terms.
The paper also gives guidelines etc....
A good read
it's a bunch of quack, unlike carbs where every carb is eventually glucose, those drinks with casein are not the same as hydrolised whey used in real EN. Nutricia and Nestlé go out of their way to create good products, I live a few miles from their factory in Europe, don't compare them to garbage like Ensure sponsored by big pharma.

There is a reason real EN costs so much, it's because enzyme breakdown without denaturing the protein is a very very expensive procedure, a few years ago this wasn't even possible, just in labs. They took years to figure out how to properly break down peptide bonds that aren't denatured and it took many more years to learn how to combine it with microfiltration and ionisation.

The stuff in some EN is the best protein on Earth, breaking peptide bonds without denaturing and removing lactose and milk fat from the whey is super difficult to do, that's what some companies do with EN, what Ensure does is take a bunch of leftover casein without filtering, leaving in the milk fat (that's why it has saturate fat %), leaving in half of the lactose, throws a bunch of sugar on it, and you're saying it's the same thing as hydrolised whey protein that is filtered many times, not it's not.

Will be a cold day in hell before anyone in a hospital here gives Ensure to someone. It is garbage, I am not the first one who said it either.
10-15-2012, 12:39 PM   #93
Robs a
 
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My son is on his 4th day of Modulan which he is thankfully managing to drink AND tolerate! He has a 6 week target which is tough but we are encouraging him to tackle it day by day. We have added an extra shake as he feels quite hungry mid afternoon. A question though, does anyone know whether the shakes need to be taken with a consistent gap in between? Often when his day is busy, sport or friends, my son runs out of time to have enough shakes. Can he double up on quantity in such a case?
10-15-2012, 04:31 PM   #94
my little penguin
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Just like food you can drink as much as you like together or separate .
Just be aware all liquid tends to swish around in the stomach and sometimes cause nausea if too much is input at the same time.
Just so he is getting it in.
DS took it one day at a time as well and had to drink een for 9 weeks original plan was 7 weeks so be prepared if they length it.
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10-15-2012, 04:33 PM   #95
imaboveitall
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Robs A, do read my older posts on Violet's history with using enteral nutrition.
The formula does not have to be taken at any specific intervals unless the pt has motility issues and cannot tolerate over a certain amount at a time (this was the case with Violet; she had such extreme gastric dysmotility she needed a feeding pump to deliver small amts at a time).
Unlike most I've read of, she was allowed ANY and ALL foods from the jump.
Her doc(s) said that food itself WILL NOT impede the benefit of the formula at all "in most (key word) cases".
She got 3000+ calories per 24hrs for the first 30 days, and ate right along though her appetite was almost nil at that point.
10-15-2012, 11:36 PM   #96
Twiggy930
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The long duration of EN is certainly daunting. My son actually enjoyed crossing off the days he had done in bright red marker on a calendar. We also promised a reward at the end of the EN. My son's reward was a large fish tank for his room and he spent all sorts of time researching the fish he was going to put in it. It worked quite well except that I now have a tank full of piranhas in my house.
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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.
01-31-2013, 07:23 PM   #97
CarolinAlaska
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I'm wondering who is still doing EEN or PEN now, how all of you did with completion, who needed maintenance meds after, what was prescribed, etc. My dd will start EEN next week. She will be doing Ensure 16 hours/day at a rate of 160 ml/hr, but start at half that. My GI still hasn't answered about maintenance meds for after. I do like the idea of periodic EN for maintenance, but I'm not finding good protocols for that, or for maintenance meds following EEN, for that matter...
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-31-2013, 07:56 PM   #98
my little penguin
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http://www.naspghan.org/user-assets/....29%5B1%5D.pdf
01-31-2013, 07:57 PM   #99
my little penguin
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http://www.practicalgastro.com/pdf/J...ionArticle.pdf
01-31-2013, 07:58 PM   #100
my little penguin
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http://onlinelibrary.wiley.com/doi/1...ibd.20115/full
01-31-2013, 08:04 PM   #101
my little penguin
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Whether you use pred or EEN maintence meds are the same .
Using EEN after the first course 6-8 weeks had a much lower success rate in kids than pred.
First course was the same rate as pred . Second not so much .
Kids tend to have severe disease . Their disease progresses over 10 years and spreads unlike adults. The younger the age of dx the worse the course.
These things are known.
I will get you the paper on remission rates and EEN
remission rates on pen with maintence meds is high though .
01-31-2013, 11:51 PM   #102
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Hi i'm pixiegirl i'm een next week.
02-01-2013, 12:27 AM   #103
Robs a
 
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My son did En for 6 weeks exclusively. He was on Modulen. at the end of the period although there was some improvement in his general wellbeing his inflammation markers were still quite high, iron levels low etc. GI insisted he go on Budesonide to speed up the "remission" I was resistant but agreed eventually. He obviously thrived on the Budesonide and after a 5 week course his bloods were absolutely normal. We are now awaiting Med Insurance decision on Revellex. Had so hoped to avoid meds and was very hopeful that with a maintenance programme of a few shakes a day he would be fine. Unfortunately this was not the case, and our GI kind of predicted that too. From the reading I have done on the subject (quite enstensive actually) it seems that maintenance meds is almost always required.
02-01-2013, 10:59 AM   #104
Tesscorm
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Yes, EN does have comparable success rates at INDUCING remission as steroids but it is not as successful at maintaining remission on its own.

My son used EN to induce clinical remission successfully but it has not eliminated all inflammation so we are looking into meds now. However, it has maintained the status quo since July 2011 when he began using EN only as maintenance (May-July 11 was exclusive period).

My understanding (and I could be wrong ) is that EN is more successful in alleviating small bowel inflammation; ironically, that is where my son still has inflammation but MREs and scopes have confirmed the inflammation in his stomach, duodenum and colon seen at diagnosis, has disappeared.

Although Stephen's new adult GI doesn't agree with me re remission, I do believe EN, with regular diet plus medication, used as a supplement aids in maintaining remission (if nothing else, is an excellent source of nutrition for developing kids! which the GI does agree with ).
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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

Last edited by Tesscorm; 02-01-2013 at 02:43 PM.
02-27-2013, 12:58 PM   #105
emillerstudio
 
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Location: Oak Park, Illinois
Hi, struggling here with my 17 year old son who had been drinking Peptamen for 2 weeks and says he is so hungry and just wants food. He is still losing weight as he had 10-15 bouts of diarrhea a day. But the blood is lessening, but that could be due to 2 doses of Methotrexate. His inflammation is off the charts with a Sed rate of over 140 though. Can't do prednisone, it sent him into a deep depression which took a year to get over.
Just feel terrible for him and go to GI tomorrow who I think will tell him he need to do a tube. He is of course totally against that. Can't imagine him doing this when he finally can go back to school.
02-27-2013, 01:05 PM   #106
CarolinAlaska
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How much Peptamen is he drinking/day? Is a nutritionist involved with helping decide how much/what kind of formula you use? We just had to go with tube feedings for our daughter. It isn't fun, but getting her healthy is our main priority. Has your doctor or have you considered Entocort? I hear it has much fewer side effects but works almost as well as prednisone if his inflammation is in the small bowel (doesn't help much above that, I understand). Some kids do the tube feedings just at night while they sleep so they can go to school during the day. You have options. Maybe it will take a change in formula. Also, is he on exclusive formula, or is he doing food too?
02-27-2013, 01:19 PM   #107
emillerstudio
 
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He is on formula exclusively and he was on Entocort about 2 years ago. It caused him to be totally out of it, brain fog big time. That was when he quit going to school at all and had a home-bound tutor to finish his freshman year. I am only now finding out that could have been the cause of a deep depression he went into after he went off the steroids. Took a year to get over that! So that is why our current GI ia avoiding steroids and using EN and methotrexate.
02-27-2013, 01:51 PM   #108
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My 14 year old son would not consider using the tube. He put his mind to taking the shakes orally and was able to do so for 6 weeks exclusively. His calorie intake was closely monitored by his nutritionist to ensure he got the right amount. He was also very hungry at first and craved chewing on something. We were able to give him sugar free chewing gum (not too often though) which kind of satisfied that need. My other child was abroad at the time so my husband and I made mealtimes a non-event, to avoid by son from having to witness us eating. It was not an easy time but through it all my son remained determined. Your son needs constant encouragement to see this through, it is well worth trying. Good Luck
02-27-2013, 02:23 PM   #109
Tesscorm
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emillerstudio,

So sorry you and your son are dealing with this! Crohns is not easy nor are its treatments! I read your other post on My Story and hope you can find some advice, knowledge and support to help you here. There are so many wonderful parents, always willing to share their experience!! They have been invaluable to me!

My son did the exclusive EN for six weeks and responded very well (I won't give the whole story here, but it's on the first page of this thread). It did induce clinical remission and alleviated all of his symptoms. Unfortunately, it was not able to eliminate all his inflammation and, actually today, is having his first remicade infusion. But, exclusive EN has comparable success rates at inducing remission as do steroids! Unfortunately, it is not as successful at maintaining remission for the long term. I do very much recommend it!!!!! It will provide your son with bowel rest, it is anti-inflammatory and will provide him with all the necessary nutrition.

I'm sure I mentioned it in my post on the first page but, just in case, my son uses an NG tube overnight. He inserts it nightly and removes it in the morning - he did not find it difficult to learn, however, everyone is different...

It does take time for the bowel to heal, which is why the exclusive period runs for 6 to 8 weeks (sometimes longer).

Hopefully, he can make it through the exclusive period and the methotrexate will be working well enough that he will be feeling much better.

03-01-2013, 03:03 PM   #110
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My 5 year old was on EN for 6 months primarily for growth problems. He has Crohn's. I highly recommend it...and it's not as scary as it seems! I inserted the tube myself, once a month. He gained 10 pounds and 3 inches in height. We were careful to refer to it as a "medicine" or "treatment". This was easier psychologically. He had no diet restrictions. He could eat whatever he wanted when he was hungry. He received about 1100 calories while he slept. Then he would have an afternoon snack and a normal dinner. He barely noticed the tube. Only the insertion bothered him. But that was only for 30 seconds. Much better than Humira injections which hurt. The NG insertion just feels funny for a few seconds going in. If there is anyone wondering whether to start EN with a young child, I'd be happy to answer any questions. We were apprehensive at first, but now I wonder why we didn't do it sooner! It's very safe...no side effects to worry about.
04-05-2013, 04:22 PM   #111
imaboveitall
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Just a bump because:

after having lactoferrin around 5000 for four weeks and then sudden GI symptoms that made me fear obstruction, old V was put on exclusive enteral feeds, no food as she has always had, and three days later her lactoferrin dropped to 477.
The GI symptoms vanished and have not returned. Today is one week on no food, just formula. Plan is six weeks.

This treatment is so awesome, I wish all would try it.
04-05-2013, 04:28 PM   #112
my little penguin
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WOOHOO!!

For numbers dropping
IS she still on Remicade?
04-05-2013, 04:43 PM   #113
Amy2
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My 16 year old is on day 12. So far, so good.
04-05-2013, 04:50 PM   #114
Jmrogers4
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That is great imaboveitall. Thank you for the update.
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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
04-06-2013, 11:38 AM   #115
CarolinAlaska
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Glad to hear Amy and IAIA. Jaedyn is done with her 8 week period and is symptom free except bad smelling gas (which I suspect is formula related). Fecal calprotectin test is pending (took 16 days last time!). Now we're trying to figure out how to reintroduce foods. How're your kids taking the formula? Orally? NG tubes? 24 hours? Night only? I hope they get the healing they need! I know they can!
04-06-2013, 12:27 PM   #116
Amy2
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My son had the most awful smelling gas when he was in the hospital and for a couple of weeks when he first got home, but as soon as he stopped eating food, it went away.

By the way, I appreciate the support and information that I have gotten on this board more than I can ever express. You guys made it possible for me to sleep at night!!!
04-06-2013, 12:40 PM   #117
CarolinAlaska
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It's really good to be able to sleep isn't it?! I'm so glad you are getting the support you need.
04-06-2013, 01:11 PM   #118
Tesscorm
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Great news Julie and Amy!!! When it works, EN really is a great option!
04-06-2013, 07:16 PM   #119
izzi'smom
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Glad to hear it!!!
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
04-06-2013, 11:35 PM   #120
DustyKat
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Good to hear all is going well for your kids Julie and Amy! Long may it continue!

Dusty.
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