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09-24-2017, 03:58 PM   #31
Maya142
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I don't think a child can become depressed because of EEN, the benefits are much greater compare to IBD symptoms.
Every child is different. Some may find not eating for many months at a time very hard. My daughter was unable to do EEN. It was just too hard on her. She would rather deal with the pain and diarrhea that come with Crohn's than not eat at all. She was also just unable to drink enough formula so she was hungry and miserable all the time.

She was able to do 80% formula, 20% food.

EEN is great but the child has to be on board. And generally, it is used for a short period of time to induce remission and medication is needed to maintain remission.
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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
09-24-2017, 08:27 PM   #32
Optimistic
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No new scopes yet, but she gets lab tests every 2-3 months including a comprehensive metabolic panel, CBC with platelets differential, erythrocyte sedimentation rate, and CRP inflammation.

Since inflammation has stayed low, our GI doc hasn't recommended medication in addition to EN. Medication isn't completely off the table, but as long as inflammation stays down while on EN, we're able to stay off meds.
Does your child do Fcp? My son is on SCD and partial EN for maintenance, but only after he got into remission with massive steroids and EEN. The only way his drs at two hospitals, one who is a diet researcher and the other not a fan, will see him is if he gets labs you mentioned at least every 3 months with FCP, scope each year, and mre and pillcam alternating every other year. Have drs asked for more? And yes all the monitoring can be a pain but it is part of what we signed up for.

And, what do they mean by inflammation staying down?
09-24-2017, 08:40 PM   #33
Maya142
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I also wanted to add to what Optimistic said - there are several parents on this site whose kids are completely asymptomatic but had simmering inflammation. Simmering inflammation, over time, can lead to narrowing and strictures and other complications (fistulae, abscesses etc).

I'll tag Clash, since her son is asymptomatic but eventually required surgery,

Fecal Calprotectin is more accurate (generally speaking) than those labs you mentioned - ESR and CRP, since it is gut specific. It will tell you if there is inflammation in the gut.

And even then, your kiddo should be monitored extra carefully as Optimistic said, to make sure that she is truly in remission and there is NO inflammation in her gut. Frequent scopes with biopsies, and MREs/pillcams etc. are needed to make sure that there really is no inflammation.
09-25-2017, 07:42 AM   #34
Clash
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My son was asymptomatic for two years after diagnosis. No pain, no diarrhea, no blood etc. His labs looked good yet when scoped there was simmering inflammation that had not been controlled even though treatment had eliminated his symptoms. Due to the simmering inflammation he required an ileocecectomy.

No matter the treatment path you choose closely monitoring disease activity and setting a goal of deep stable remission with full mucosal healing is key. Any inflammation left lingering can cause permanent damage that can lead to obstructions, stricturing and surgery.
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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
09-25-2017, 08:52 AM   #35
ladyphoenix1010
 
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Optimistic, Maya, and Clash - Thanks for giving me some things to think about. This is all very helpful, as my daughter was only diagnosed 11 months ago.

CRP Inflammation low, as in being within the standard range of 0 - 8.0 mg/L.

I'm not familiar with the acronym FCP. Is that another diet or are you referring to the Fecal Calprotectin test? I'll have to ask our doctor about that test. So far my daughter had one fecal test but it was to test for C. Diff infection.

And I'll have to ask how often we should get scopes done. I haven't thought to ask that.

We haven't tried SCD. Our doctor has had several patients that have tried it and it worked for some but not for most. He is willing to work with us on it if we choose to go that route, but he doesn't highly recommend it. My daughter doesn't eat much as it is, so it would be tough to restrict her diet any further. It might be worth a try for kids that really like to eat and aren't too picky.
09-25-2017, 09:19 AM   #36
my little penguin
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Fcp
Is fecal caloprotectin test .
11 months is really early in the disease
And definitely insist on scopes at least yearly
Ds was dx 7 years ago
Bloodwork always looks normal
But we still do imaging MRE/pill cam scopes about once a year despite being on meds and 50% formula plus food

Good luck
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DS - -Crohn's -Stelara
09-25-2017, 12:42 PM   #37
richard1353
 
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That sounds greatly for long term EEN and the component of EEN may be different China with USA. I will talk about my son and ask for him his choice. And my wife had an appointment with the doctor one weeks later. We also hear from the suggestions of doctor and decide what about we do next step! Of course, I will come to here and ask for your warmly and timely responses and replies! Thanks again! All of people give my courage against CD! LOVE!
09-25-2017, 02:07 PM   #38
Maya142
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And I'll have to ask how often we should get scopes done. I haven't thought to ask that.

We haven't tried SCD. Our doctor has had several patients that have tried it and it worked for some but not for most. He is willing to work with us on it if we choose to go that route, but he doesn't highly recommend it. My daughter doesn't eat much as it is, so it would be tough to restrict her diet any further. It might be worth a try for kids that really like to eat and aren't too picky.
ladyphoenix1010 -- Our GI does not recommend the SCD either, unless the kiddo is REALLY willing to commit to it. She says that it's too restrictive and in her experience, kids lose weight.

She prefers the IBD AID - https://www.umassmed.edu/nutrition/ibd/ibdaid/

I would definitely ask about when your kiddo will be scoped next. Were your daughter's CRP and ESR elevated at diagnosis?

The reason I ask is that they're not always good markers for inflammation. Sometimes kids have one elevated and not the other, or perfectly normal ESR and CRP and are still a mess on the inside. You have to figure out if they are good markers for your kiddo - do they match what it is going on inside and the only way you can really know is to scope.

My daughter had perfectly normal blood work for a long time, even when scopes showed she had inflammation through her entire colon and terminal ileum and had ulcerations in her colon.

Whatever treatment you choose - diet, medication - she needs to be monitored very carefully. Fecal Calprotectin is more accurate than ESR and CRP but really scopes are the gold standard (with a pillcam/ MRE to check the small bowel).

The other thing to know is that IBD in kids tends to be aggressive, more so than in adults. So kids tend to be treated aggressively, to prevent damage to their intestines. You can live without a colon but not without a small bowel.
09-25-2017, 02:37 PM   #39
richard1353
 
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ladyphoenix1010 -- Our GI does not recommend the SCD either, unless the kiddo is REALLY willing to commit to it. She says that it's too restrictive and in her experience, kids lose weight.

She prefers the IBD AID - https://www.umassmed.edu/nutrition/ibd/ibdaid/

I would definitely ask about when your kiddo will be scoped next. Were your daughter's CRP and ESR elevated at diagnosis?

The reason I ask is that they're not always good markers for inflammation. Sometimes kids have one elevated and not the other, or perfectly normal ESR and CRP and are still a mess on the inside. You have to figure out if they are good markers for your kiddo - do they match what it is going on inside and the only way you can really know is to scope.

My daughter had perfectly normal blood work for a long time, even when scopes showed she had inflammation through her entire colon and terminal ileum and had ulcerations in her colon.

Whatever treatment you choose - diet, medication - she needs to be monitored very carefully. Fecal Calprotectin is more accurate than ESR and CRP but really scopes are the gold standard (with a pillcam/ MRE to check the small bowel).

The other thing to know is that IBD in kids tends to be aggressive, more so than in adults. So kids tend to be treated aggressively, to prevent damage to their intestines. You can live without a colon but not without a small bowel.
Thanks Maya! My son had the blood tests for ESR and CRP two weeks ago. My doctor told us that he need the blood tests every month and have another scope after EEN for eight weeks. So my wife made the appointment and prepared to stay in hospital one week.BUT I want to continue the EEN for another month and I will come back in December, I will take him to have the carefully detection in another hosptial. Some people tell me,the scopes like MRI, especially colonoscopy only take interval two months(eight weeks) that is not good for children. That is first reason for prolonging the time of EEN.
As me mentioned, we need take one week to have the scopes likes MRI or colonoscopy in hospital. That is entirely different in USA. Of course, my son's ESR(maybe about 60) is high at diagnosis and down(ESR 26mm/h,normal 0-20;High sensitive C-reactive protein 3mg/L,normal 0-8 ) after EEN for four weeks, he also took the detection of Fecal Calprotectin at diagnosis, the report in my another notebook, I will tell you the data tomorrow. Unfortunately, Fecal Calprotectin that isn't popular detection method in China,although is golden criterion for CD. It only can be done in only one hospital in Zhejiang Province(maybe you can't imagine) and we took the test sample to that hospital.
I will put on the data of another blood test as soon as possible when my son take the detection. IF the level is aimed at normal range, I want to keep on EEN because I see my son effectively and tremendous improvements. He is smiling and go on study in Grade Six again. As you imagine, he only wanted to have a rest in bed two months ago.That is the second reason for keeping on ENN for another month(total twelve weeks).
Hope everything better and better for everyone!
09-25-2017, 02:41 PM   #40
ladyphoenix1010
 
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ladyphoenix1010 -- Our GI does not recommend the SCD either, unless the kiddo is REALLY willing to commit to it. She says that it's too restrictive and in her experience, kids lose weight.

She prefers the IBD AID - https://www.umassmed.edu/nutrition/ibd/ibdaid/

I would definitely ask about when your kiddo will be scoped next. Were your daughter's CRP and ESR elevated at diagnosis?

The reason I ask is that they're not always good markers for inflammation. Sometimes kids have one elevated and not the other, or perfectly normal ESR and CRP and are still a mess on the inside. You have to figure out if they are good markers for your kiddo - do they match what it is going on inside and the only way you can really know is to scope.

My daughter had perfectly normal blood work for a long time, even when scopes showed she had inflammation through her entire colon and terminal ileum and had ulcerations in her colon.

Whatever treatment you choose - diet, medication - she needs to be monitored very carefully. Fecal Calprotectin is more accurate than ESR and CRP but really scopes are the gold standard (with a pillcam/ MRE to check the small bowel).

The other thing to know is that IBD in kids tends to be aggressive, more so than in adults. So kids tend to be treated aggressively, to prevent damage to their intestines. You can live without a colon but not without a small bowel.
ESR and CRP were both very elevated when she was first having symptoms, which is what prompted our primary care doc to refer her for an MRE and then scopes. MRE confirmed inflammation and scopes found non-caseating granulomas to conclude a diagnosis of Crohn's. Since treatment with EN, ESR and CRP levels have gone way down.
09-25-2017, 02:48 PM   #41
richard1353
 
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ESR and CRP were both very elevated when she was first having symptoms, which is what prompted our primary care doc to refer her for an MRE and then scopes. MRE confirmed inflammation and scopes found non-caseating granulomas to conclude a diagnosis of Crohn's. Since treatment with EN, ESR and CRP levels have gone way down.

Yes, lady phoenix! My son have the only treatment with EEN for four weeks and ESR(60 down 26) is down and CRP is in normal range. I believe that the ESR and CRP will fall on the normal range in next blood test( another four weeks). I am confident for that!
09-25-2017, 02:52 PM   #42
richard1353
 
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ANOTHER QUESTION!
Do you think the use/benefit of the Manuka Honey for CD, especially UMF 15+ or higher!

Last edited by richard1353; 09-26-2017 at 02:03 PM.
09-25-2017, 02:53 PM   #43
Maya142
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ESR and CRP were both very elevated when she was first having symptoms, which is what prompted our primary care doc to refer her for an MRE and then scopes. MRE confirmed inflammation and scopes found non-caseating granulomas to conclude a diagnosis of Crohn's. Since treatment with EN, ESR and CRP levels have gone way down.
That is really encouraging - hopefully, everything looks good too.

richard1353, we have not tried Manuka Honey.
09-25-2017, 03:11 PM   #44
richard1353
 
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That is really encouraging - hopefully, everything looks good too.

richard1353, we have not tried Manuka Honey.
You are welcome and warmly consultative group in the forum,like as sunshine lights in winter! We are from different countries and put together in oder to fight for CD!
09-25-2017, 08:33 PM   #45
bethhall3434
 
Join Date: Jul 2017
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My daughter Emma has been on 80/20 EN for over a year and a half. It has really helped with her growth, but hasn't done much for her CD. She has always been below the curve and was falling off her own, so EN has been great for growth. Her twin will probably follow the same path.


09-25-2017, 10:35 PM   #46
Optimistic
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My daughter Emma has been on 80/20 EN for over a year and a half. It has really helped with her growth, but hasn't done much for her CD. She has always been below the curve and was falling off her own, so EN has been great for growth. Her twin will probably follow the same path.
I'm very impressed that she has done the 80/20 for so long and thrilled that it works at least for growth. Are symptoms improving? How about scopes/biopsies?

80/20 was suggested for my son at one point. If you do the math that is really only 4 meals a week regardless of whether they drink or tube feed. We understood that 20 was the highest one could go with food or the odds of inflammation shot up exponentially. That truly was the tipping point for problems to set in. I am a big ruler follower and I know I would have been drill Sargent watching to be sure there were only 4!

My son is about 20/80 formula to food, sometimes more like 30. One of his drs would like him to go 80/20 for a few weeks every now and then for good measure. He may try that.
09-25-2017, 10:44 PM   #47
Optimistic
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Optimistic, Maya, and Clash - Thanks for giving me some things to think about. This is all very helpful, as my daughter was only diagnosed 11 months ago.

CRP Inflammation low, as in being within the standard range of 0 - 8.0 mg/L.

I'm not familiar with the acronym FCP. Is that another diet or are you referring to the Fecal Calprotectin test? I'll have to ask our doctor about that test. So far my daughter had one fecal test but it was to test for C. Diff infection.

And I'll have to ask how often we should get scopes done. I haven't thought to ask that.

We haven't tried SCD. Our doctor has had several patients that have tried it and it worked for some but not for most. He is willing to work with us on it if we choose to go that route, but he doesn't highly recommend it. My daughter doesn't eat much as it is, so it would be tough to restrict her diet any further. It might be worth a try for kids that really like to eat and aren't too picky.
Diet is hard. My son is only slightly picky and even then he gets tired of same things over and over. It really requires a mind set shift, to think of food as nourishment versus tasty or enjoyable. I think he does some Extra EN sometimes when he isn't interested in his food options.

I'm not knocking it. Im actually grateful it works and I think part is I was CRAZY militant about following exactly. I'm used to the constant shooing and making his own things, teaching him how to. But just never knew how every social event involves food. It is worse in other counties!

My husband did EEN with my son in the beginning. He said it was horrible....
09-26-2017, 11:06 AM   #48
bethhall3434
 
Join Date: Jul 2017
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I'm very impressed that she has done the 80/20 for so long and thrilled that it works at least for growth. Are symptoms improving? How about scopes/biopsies?



80/20 was suggested for my son at one point. If you do the math that is really only 4 meals a week regardless of whether they drink or tube feed. We understood that 20 was the highest one could go with food or the odds of inflammation shot up exponentially. That truly was the tipping point for problems to set in. I am a big ruler follower and I know I would have been drill Sargent watching to be sure there were only 4!



My son is about 20/80 formula to food, sometimes more like 30. One of his drs would like him to go 80/20 for a few weeks every now and then for good measure. He may try that.


Unfortunately it hasn't helped her inflammation. Her last scope was in July and she still had a lot of inflammation in her LI, colon and TI. She started MTX but hasn't added the biologic. My daughters both have an appt today with their specialist. My daughter Abby gets her g-tube placed on Wed. morning. Wish us luck! Abby was diagnosed in July and has only tried the ET. I don't think it has helped her disease because she still has very loose stools. Her growth has. Even great though. She has gained almost 10 lbs since July 16th!


09-26-2017, 01:48 PM   #49
richard1353
 
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Unfortunately it hasn't helped her inflammation. Her last scope was in July and she still had a lot of inflammation in her LI, colon and TI. She started MTX but hasn't added the biologic. My daughters both have an appt today with their specialist. My daughter Abby gets her g-tube placed on Wed. morning. Wish us luck! Abby was diagnosed in July and has only tried the ET. I don't think it has helped her disease because she still has very loose stools. Her growth has. Even great though. She has gained almost 10 lbs since July 16th!
I hope to hear the good messages from your two daughters!
10-04-2017, 03:42 PM   #50
sharmistha.roy
 
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Which EEN formula was used? For my 13 year old i was recommended Nutricia-are there any others
10-04-2017, 03:49 PM   #51
ladyphoenix1010
 
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My 11 year old daughter takes Pediasure Peptide 1.5 Cal, 1068 ml/day.
10-04-2017, 03:51 PM   #52
Maya142
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My kiddo was on Neocate Splash - anywhere from 2000 calories per day to 400 calories per day, depending on how much food she was eating.

We tried many formulas - Peptamen Jr, Pediasure Peptide, Peptamen Jr 1.5, Elecare, Orgain, Ensure, Boost. Neocate is what agreed with her.
10-04-2017, 04:50 PM   #53
my little penguin
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Ds is on neocate jr chocolate by nutrica
He drinks 1000 -1200 calories per day plus 1000 calories of food
He has been on 2200 calories of pure een a day three times

He has been on in the past
Kids boost
Peptamen jr
Peptamen jr with prebio
All by nestle
10-04-2017, 05:02 PM   #54
pdx
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Which EEN formula was used? For my 13 year old i was recommended Nutricia-are there any others
I'm not familiar with Nutricia, but it looks like they have a range of formulas that are similar to the ones I'm familiar with. Formulas can be polymeric, semi-elemental, or elemental; the difference is in how much their nutrients are broken down. The polymeric formulas aren't broken down, so they taste fairly good, but they are difficult to digest if your intestines aren't working well. In semi-elemental and elemental formulas, the nutrients are broken down to make them easier to digest, but that makes them taste bad, so kids sometimes need to use an NG-tube to ingest them.

My daughter tried Ensure and Boost first, which are polymeric formulas. She couldn't digest them (they gave her cramps and nausea), so we moved on to Peptamen, which is a semi-elemental formula. She couldn't drink it because of its taste, so she used an NG-tube.

Did your doctors tell you which particular Nutricia formula they want your daughter to use? Some hospitals have a dietician who can help with that decision.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
10-04-2017, 10:03 PM   #55
bethhall3434
 
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Which EEN formula was used? For my 13 year old i was recommended Nutricia-are there any others


My daughters are on Boost Kids Essentials 1.5, but they are not EEN. They are at 80/20.

Abby's G-Tube placement went well. She's healing way quicker than Emma did. Plus, this time around I'm better at taking care of it. Practice definitely helped.


10-05-2017, 01:00 AM   #56
pdx
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Abby's G-Tube placement went well. She's healing way quicker than Emma did. Plus, this time around I'm better at taking care of it. Practice definitely helped.
Glad to hear this!
10-08-2017, 11:06 AM   #57
richard1353
 
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Which EEN formula was used? For my 13 year old i was recommended Nutricia-are there any others
My son drinks a can of Ensure per day. Its weight is 400g and maybe 2000 Kcal.
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