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How long for EEN?

Hello, I need some suggestions with your experiences to struggle for CD.
My son started the EEN(Exclusive Enteral Nutritional) with oral dose everyday since 10 August.Thanks be to God! I think the EEN therapy that relieve his CD and make him in remission. His state is more excellent and he has gained his weight for about twenty days.My doctor asks him with EEN about two months and make the test again in hospital again in October.
I want to ask him to continue the EEN therapy until I come back to China. Then I will take him to have some tests again in December. My wife have no more time to take care of two children(11-year-old boy and ten-month-old girl) and also she need have to work for Monday to Friday. If my son can keep with EEN, they can solve with all problems and only waiting for me. Because I must have worked in Germany one year, I can leave here in December.
So I want to know, do you think the benefits and impacts of long-term EEN for children? If you are me, what's you choice? Thank your opinions or advices!
 

my little penguin

Moderator
Staff member
Een is typically only done to introduce remission (6-8 weeks )
Since you are asking a child not to eat any solid food
That is extremely difficult socially /psychologically on a child or adult long term
It does fix the problem but long term een can cause issues with blood sugar
Since formula has a large amount of sugar
Is difested fast and causes blood sugar spikes
Short term it is not an issue
Long term it can be

A child can become bitter withdrawn depressed etc because the desire to eat solid food is always there
It's so difficult most adults fail at een before even 6 weeks are up

My child has done een 3-4 times
Each only 6-9 weeks
Longer is just too hard mentally

Can you discuss with your child's doctors 90/10 or 80/20?
 

my little penguin

Moderator
Staff member
Big hospitals in the us use 80/20 or 90/10 (90% formula 10% solid food) as maintenance


A novel enteral nutrition protocol for the treatment of pediatric Crohn's disease.
Gupta K, et al. Inflamm Bowel Dis. 2013.
Show full citation
Abstract
BACKGROUND: Enteral nutritional therapy (EN) is an effective modality for inducing and maintaining remission in pediatric patients with Crohn's disease (CD). The standard protocol for EN provides patients with 100% of their caloric needs for induction of remission. The aim of this study was to determine the efficacy of delivering 80% to 90% of patient's caloric needs through EN, to induce remission in pediatric patients with CD. This approach allows patients to consume remaining calories from a normal diet.

METHODS: A retrospective review of charts from 1998 to 2010 was conducted at The Children's Hospital of Philadelphia. remission (Pediatric Crohn's Disease Activity Index <10) and response (decrease in Pediatric Crohn's Disease Activity Index score of ≥12.5 points) were calculated before and after treatment with EN. Weight z scores and laboratory parameters were evaluated in all participants.

RESULTS: Forty-three charts were evaluated. Mean age of participants was 12.8 years (5.1-17.4), 67% were male and 33% female patients. remission and response were evaluated in a group of 23 participants, with no missing data. There were reductions in erythrocyte sedimentation rate (P < 0.0001) and C-reactive protein (P < 0.02), and increases in albumin (P < 0.03). Mean Pediatric Crohn's Disease Activity Index score at baseline was 26.9 and was reduced to a score of 10.2 at follow-up (P < 0.0001). Induction of remission was achieved in 65% and response in 87% at a mean follow-up of 2 months (1-4 months).

CONCLUSIONS: This novel EN protocol seems to be effective for the induction of remission in pediatric patients with CD and contributes to increasing weight and improving laboratory markers. This protocol may result in improved EN acceptance and compliance and will be evaluated prospectively.
https://www.ncbi.nlm.nih.gov/m/pubmed/23567777/
 

Maya142

Moderator
Staff member
I would also ask about 80% formula and 20% food - long term EEN is very hard on a child, particularly one who is old enough to want food and old enough to not want to be different.

What medication is your son on for maintenance?
 
Thanks my dear MLP and Maya142 timely responses and good suggestions.
Because my son are confirmed in August 6, his GI didn't give us any medicines just only using EEN. And two months later, then go to hospital again to examine intestine healing. Maybe at that time, we can get the medicine to maintain the remission. But in Children' Hospital, it need spend one week to inspection his conditions. So I want to have another termine in December after four months'EEN. Then we have more time to deal with boring problems.

Your advice indicated about 80% formula and 20% food. My meaning is that my son only takes the 20% food like fluid simple food(fish soup,meat soup) and 80% formula without any medicine until December 15. I think he will be happy to hear that news and take a blood inspection every month to observer intestine inflammation.

SO my dear MLP and Maya, is my thought right or not? Thanks again.
 

Maya142

Moderator
Staff member
If he is ok with being on 80% formula and 20% food, it won't hurt him. But generally EEN is used to induce remission and a maintenance medication is started at the same time to keep him in remission.

If you were to start a medication in December and stop EEN at the same time, it's possible that he will flare.

Generally, medications for IBD take quite a while to kick in. Remicade is fastest - can kick in with the first infusion or it can take 6 months. Humira (another biologic) takes between 6 weeks and 6 months. 6MP or Imuran would take at least 3 months, but could take much longer. It depends on the kid.

I would ask to start a maintenance medication NOW, so that he can stop EEN in December. By then whatever maintenance medication you have started will have had some time to kick in and it's less likely that he will flare once you stop EEN.

Is it possible for you to get a second opinion?
 

my little penguin

Moderator
Staff member
Why a week innthe hospital ?
Upper and lower scope only take a few hours and kids go home the same day in the US

80% formula and 20% food
The 20% food can be any solid food the kiddo wants
Cake meats veggies fish potatoes rice etc...
 
Why a week innthe hospital ?
Upper and lower scope only take a few hours and kids go home the same day in the US

80% formula and 20% food
The 20% food can be any solid food the kiddo wants
Cake meats veggies fish potatoes rice etc...

In China, we must enroll his name and stay in the hospital then next day morning we need to take the medicine for clearing his intestine. next day he will have the MRI or intestine mirror, but the doctor told us we can't do both in one day in last time.

Dear MLP, can we have 80% formula and 20% food and without any medicine until December?
 

Maya142

Moderator
Staff member
We honestly cannot advise you - you need to follow your doctor's advice. We are NOT doctors. You should discuss the whole situation with your doctor and your son and come up with a plan together.

In the US, the prep for a colonoscopy (to clear his colon) is done at home. A colonoscopy is a simple outpatient procedure here. We do the prep at home the day before and then go to the hospital for the scope. We would return to the hospital on a different day to do the MRE.
 
If he is ok with being on 80% formula and 20% food, it won't hurt him. But generally EEN is used to induce remission and a maintenance medication is started at the same time to keep him in remission.

If you were to start a medication in December and stop EEN at the same time, it's possible that he will flare.

Generally, medications for IBD take quite a while to kick in. Remicade is fastest - can kick in with the first infusion or it can take 6 months. Humira (another biologic) takes between 6 weeks and 6 months. 6MP or Imuran would take at least 3 months, but could take much longer. It depends on the kid.

I would ask to start a maintenance medication NOW, so that he can stop EEN in December. By then whatever maintenance medication you have started will have had some time to kick in and it's less likely that he will flare once you stop EEN.

Is it possible for you to get a second opinion?
I was told that my child don't need the Remicade by doctor and in China we can't use the Humira for CD. My doctor told me that the Remicade will be choose if the conditions turned worse. In China,now the Humira is using against CD for clinical testing.
 

my little penguin

Moderator
Staff member
I can't tell you what treatment is acceptable for your child
You need to speak to your child's GI doctor
Only a doctor can determine if 80/20 is an acceptable treatment for your child and their history.
 

Maya142

Moderator
Staff member
There are other medications - Imuran/6MP or Methotrexate. Those are immunomodulators. Imuran/6MP are pills and Methotrexate can be taken orally (pills) or by injection. They're used in combination with a biologic or by themselves.
 
We honestly cannot advise you - you need to follow your doctor's advice. We are NOT doctors. You should discuss the whole situation with your doctor and your son and come up with a plan together.

In the US, the prep for a colonoscopy (to clear his colon) is done at home. A colonoscopy is a simple outpatient procedure here. We do the prep at home the day before and then go to the hospital for the scope. We would return to the hospital on a different day to do the MRE.
That is a very convenient way to prepare that job. We can't imagine for that! All of the work must do those in the hospital.
 
There are other medications - Imuran/6MP or Methotrexate. Those are immunomodulators. Imuran/6MP are pills and Methotrexate can be taken orally (pills) or by injection. They're used in combination with a biologic or by themselves.
Yes, I known that medicines and maybe the Melazine will be fit to my child.
 
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my little penguin

Moderator
Staff member
Mesamalmine-pentasa etc (5-asa) are Not FDA approved or recommended as a monotherapy for Crohn's disease

Most GI equate 5-asa to giving aspirin for a brain tumor
Not going to help much but not going to hurt either

5-asa only treat the top surface of the intestine and leave the lower layers to simmer with inflammation
Crohns affects all layers of the intestine not just the top
UC only affects the top layer
5-asa are very effective in UC
 
Mesamalmine-pentasa etc (5-asa) are Not FDA approved or recommended as a monotherapy for Crohn's disease

Most GI equate 5-asa to giving aspirin for a brain tumor
Not going to help much but not going to hurt either

5-asa only treat the top surface of the intestine and leave the lower layers to simmer with inflammation
Crohns affects all layers of the intestine not just the top
UC only affects the top layer
5-asa are very effective in UC
Dear MLP, thanks a lot! In China, GI likes to use the Mesamalmine to maintain the remission that has smaller side effects than other medicines. His mother makes an appointment two weeks later,then the GI maybe give us his therapy according to the inspection results. I will also show that in order to seek out helps and precautions.
 
I spend time to read the post again and know more information, Thanks again for MLP and Maya! If you have the chances go to Hangzhou that is a beautiful and famous city in China, Please contact me without hesitation.
 
My daughter did EEN for about 3 months, then gradually worked in more food days and less formula days. We have had great success with enteral therapy alone, no medications. I asked our doctor last month how long she would be on and off the feedings and he said, "You don't stop a treatment that puts the disease in remission."

So we have actually went ahead with replacing the NG tube with a G tube that goes directly into her belly. We are committed for the long haul. The goal is to get her down to 1 week per month of feeding, and 3 weeks of food.

My daughter is 11. While at times she feels that she is missing out on food, for the most part she has done great. She gets a trip to the amusement park tomorrow for her nearly one year on and off the feeding tube!

Our doctor is a resident at the U of M Masonic Children's Hospital in Minneapolis which is highly rated. I trust and recommend his opinion and methods for EEN for children with Crohn's.

Best of luck to you!
 

Maya142

Moderator
Staff member
ladyphoenix1010, has your daughter been scoped since food has been added back? Has she had her Fecal Calprotectin tested recently? Labs?

Generally, once food is reintroduced, the child will eventually flare unless he/she is on a maintenance medication.

There are definitely some kids who are able to stay in remission using diet only. But it's rare. We have one parent on this forum whose son has been able to stay in remission using the SCD and supplemental EN.

Our GI is very big on EEN too. We go to CHOP, which has one of the biggest and best ped. GI depts. in the country. They are doing a lot of research on using supplemental EN and specific diets to control the disease.

Our GI is fine with trying diet but says the child has to be monitored very carefully and if after 6-8 weeks, scopes show inflammation, it is time to move on to medications.

She monitors using FC and scopes/MRE/pillcam. She says kids who are only using a diet and no medication need to be scoped more frequently and monitored really carefully to make sure there is no simmering inflammation, which could lead to complications over time (scar tissue, strictures, surgery etc).
 
ladyphoenix1010, has your daughter been scoped since food has been added back? Has she had her Fecal Calprotectin tested recently? Labs?



Generally, once food is reintroduced, the child will eventually flare unless he/she is on a maintenance medication.



There are definitely some kids who are able to stay in remission using diet only. But it's rare. We have one parent on this forum whose son has been able to stay in remission using the SCD and supplemental EN.



Our GI is very big on EEN too. We go to CHOP, which has one of the biggest and best ped. GI depts. in the country. They are doing a lot of research on using supplemental EN and specific diets to control the disease.



Our GI is fine with trying diet but says the child has to be monitored very carefully and if after 6-8 weeks, scopes show inflammation, it is time to move on to medications.



She monitors using FC and scopes/MRE/pillcam. She says kids who are only using a diet and no medication need to be scoped more frequently and monitored really carefully to make sure there is no simmering inflammation, which could lead to complications over time (scar tissue, strictures, surgery etc).


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.
 
Thanks,ladyphoenix1010! Your daughter's age is same with my son. He is 11 years old too. Now he has insisted on EEN six weeks. I am proud of him although I can't stay with him and give him supports only using telephone. Maybe I will tell him for EEN another months and let his intestine rest more time.

Maya also told only one child has EEN and SCD diet that made him in remission. In china, if the doctor can't find other reasons for intestinal inflammations, they will define the CD for this disease. They said exclusion method! I want to know how confirm CD in us.
 
ladyphoenix1010, has your daughter been scoped since food has been added back? Has she had her Fecal Calprotectin tested recently? Labs?

Generally, once food is reintroduced, the child will eventually flare unless he/she is on a maintenance medication.

There are definitely some kids who are able to stay in remission using diet only. But it's rare. We have one parent on this forum whose son has been able to stay in remission using the SCD and supplemental EN.

Our GI is very big on EEN too. We go to CHOP, which has one of the biggest and best ped. GI depts. in the country. They are doing a lot of research on using supplemental EN and specific diets to control the disease.

Our GI is fine with trying diet but says the child has to be monitored very carefully and if after 6-8 weeks, scopes show inflammation, it is time to move on to medications.

She monitors using FC and scopes/MRE/pillcam. She says kids who are only using a diet and no medication need to be scoped more frequently and monitored really carefully to make sure there is no simmering inflammation, which could lead to complications over time (scar tissue, strictures, surgery etc).
Hello, Maya, I think that EEN can effectively lead into remission for easy digestion and absorption. So you can add them to increase children's nutrition.
 
Thanks,ladyphoenix1010! Your daughter's age is same with my son. He is 11 years old too. Now he has insisted on EEN six weeks. I am proud of him although I can't stay with him and give him supports only using telephone. Maybe I will tell him for EEN another months and let his intestine rest more time.



Maya also told only one child has EEN and SCD diet that made him in remission. In china, if the doctor can't find other reasons for intestinal inflammations, they will define the CD for this disease. They said exclusion method! I want to know how confirm CD in us.


Basically the same in US, if there is no other reason for inflammation, then it is inflammatory bowel disease. In order to make the final diagnosis, they do endoscopy and colonoscopy to help determine if it is Crohn's or ulcerative colitis.
 
Basically the same in US, if there is no other reason for inflammation, then it is inflammatory bowel disease. In order to make the final diagnosis, they do endoscopy and colonoscopy to help determine if it is Crohn's or ulcerative colitis.
OK, That seems the same proceed of confirmation IBD with China. We also took the colonoscopy,if there are the continuous inflammatory, that is UC, on the contrary CD.
 
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my little penguin

Moderator
Staff member
Some require the non caseating granulomas to be found on the biopsy samples in order for pathology to check the Crohns box on the report
That said only 33% of patients have granulomas found
More are found on children though

Ds had multiple second opinions and all the docs and hospitals pointed to the granulomas as confirming Crohns
 

my little penguin

Moderator
Staff member
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886464/

In children, granulomas may also be seen in chronic granulomatous disease with pigmented macrophages in the lamina propria; common variable immune deficiency with its lack of plasma cells; and tuberculous infection with disproportionate submucosal inflammation and epithelioid histiocytes.48-50 The frequency of granulomas is higher in children with Crohn's colitis even when the difference in the number of colonoscopic biopsies is taken into account.51-53 Granulomas were identified in 61% of fully investigated pediatric patients at diagnosis, and 42% of these granulomas were found only in the terminal ileum and upper gastrointestinal tract, a finding that emphasizes the need to biopsy these sites.51

In a pediatric study, a significant proportion of children with new onset UC had patchy microscopic features of chronicity, with rectal sparing and little or no architectural distortion. This now-recognized rectal sparing phenomenon, in otherwise typical cases of UC, may cause confusion with CD.21 In another study, the rectal biopsies in children did not differ with those from an adult control group.19 Focal crypt atrophy is also less common in children.20 In colonic resections, microscopic inflammatory foci are common in grossly normal-appearing mucosa at surgical margins, raising the possibility of an increased recurrence rate. However, studies have concluded that the rate of recurrence is not increased by the presence of microscopic disease at the margins.52-54 In general, it is recommended that only the grossly involved bowel should be resected.55 Granulomas in the absence of associated inflammation at the margin are not considered clinically significant.

In children and adults, the histologic changes of early UC and CD differ from that of established disease, and the degree of clinical activity of disease correlates with the histologic degree of inflammation in UC and CD to a lesser extent.56,57 In both groups, drugs used for treatment can induce mucosal healing, and the rectal mucosa may appear to revert to normal following therapy.44,58,59 Mucosal involvement may become patchy or discontinuous, an appearance that closely resembles that seen in CD.60 Post-treatment biopsies may also resemble those obtained in the early phases of IBD when crypt distortion may not be present.61

CD is particularly associated with inflammation of the upper part of the gastrointestinal tract. The performance of upper endoscopy in children with IBD has provided an additional diagnostic yield and guided the differentiation of disease type in many patients. In one study of children with IBD, some of the children with unaffected colons were diagnosed with CD solely on the basis of information from upper endoscopy.62 Investigators suggested that, in the absence of Helicobacter pylori infection, focal chronic gastritis and active gastritis were evidence of CD in those patients with colitis (Figure 5).63,64 In the stomach, characteristic focal mucosal collections of lymphocytes, sometimes accompanied by neutrophils with associated inflammatory damage to the epithelium, have been referred to as focally enhanced gastritis.65 In a review of upper gastrointestinal tract biopsies in children with CD, there was an increased incidence of gastric erosions with ulceration and histologic abnormalities. In addition, abnormal histology was noted in biopsy areas that appeared normal endoscopically.66 These microscopic findings have defined the role of upper gastrointestinal endoscopy with biopsy in the investigation of IBD, particularly in the distinction of CD. Granulomas confirming the diagnosis of CD were found in the upper gastrointestinal tracts of 28% of children with CD. In some cases, granulomas were found solely in the upper gastrointestinal tracts.67

Figure 5
Figure 5
Focal antral inflammation in Crohn's disease.
However, reports have described inflammatory changes in the stomach and proximal gastrointestinal tract of patients with UC as well; hence, pathology in the upper gastrointestinal tract should no longer exclude its diagnosis.68 Ruuska and coworkers first drew attention to inflammatory changes in the upper gastrointestinal tract in 1994.69 In the endoscopic and biopsy examinations of children with IBD, UC patients had esophagitis, nonspecific gastritis, gastric ulcers, and duodenal ulcers. Kaufman and associates reported chronic active gastritis in children initially diagnosed with CD, which was called UC after colectomy.70 Chronic nonspecific inflammation is seen most frequently, whereas focal antritis in UC is uncommonly reported. Focal antritis, particularly if there are features of activity, is more suggestive of CD, but not diagnostic on its own.68,71,72 In an adult population, focal periglandular inflammation was more frequent in CD (43% of 94 patients), but this pattern of inflammation was also seen in 12% of patients with UC and 19% of controls.73

Pascasio and colleagues reviewed 438 biopsies in children with gastritis looking for specific histopathologic parameters, including markers for CD such as focal neutrophilic glandulitis.64 Of these cases, 58 were diagnosed as having CD by colonic biopsy and other standard criteria, 77% of which were predicted to have CD by gastric biopsy alone. In this study, none of the focal glandulitis biopsies had a history of UC. The prevalence of endoscopic esophageal CD in children was 7.6%, though histologic evidence is greater in children with colonic CD. Not all esophageal disease is associated with gastric lesions.27
 

my little penguin

Moderator
Staff member
5-year-old Italian boy was admitted to our Pediatric Gastroenterology Unit with a presumptive diagnosis of metastatic Crohn’s disease (CD) or cutaneous manifestations of inflammatory bowel disease.The patient’s past medical history included neonatal pyoderma requiring antibiotic therapy, intermittent diarrhea and abdominal pain since 2 years of age, and hospitalization at the age of three for treatment of severe pneumonia with pleural effusion. Laboratory tests at time of hospitalization showed elevated inflammatory parameters, iron deficiency anemia, and positive serologic screening for celiac disease, later confirmed by endoscopy. The patient started a gluten-free diet but continued to have sporadic episodes of diarrhea and abdominal pain, recurrent oral ulcerations, persistent anemia, and elevated inflammatory markers. The following year, the patient experienced a relapse of pneumonia, preceded 7 days earlier by fever, abdominal pain, and diarrhea, followed by the appearance of two painful red nodules, one on the left leg and one on the lower left abdominal region. The lesions progressively evolved into round demarcated ulcers with violaceous edges and a yellow surface (Figure 1).

Figure 1
Demarcated ulcers with violaceous edges and a yellow surface.
Physical examination at presentation showed poor general condition and nutritional status, mild cervical lymphadenopathy, tenderness of the lower left abdomen during examination, and perianal skin tags, but no hepatosplenomegaly or other masses. Physical examination revealed that the patient’s height and weight were below the 10th percentile.

Laboratory tests demonstrated leukocytosis (WBC 20,500/μL, 65% neutrophils, 19%, lymphocytes, 5% monocytes, 9% eosinophils), thrombocytosis (PLT 635,000/μL), iron deficiency anemia, hypoalbuminemia, and elevated fecal calprotectin level. Inflammatory bowel disease markers were positive for IgA and IgG antibodies against Saccharomyces cerevisiae (ASCA) and negative for perinuclear anti-nuclear cytoplasmic antibodies. Topical and systemic antibiotic therapy had been performed without success.We performed ileocolonoscopy, which revealed isolated aphthous ulcerations in the left colon with normal mucosa (Figure 2). Histology showed mild distortion of crypt architecture, cryptitis, and the presence of epithelioid granulomas in the lamina propria of both the ileum and the colon, a picture consistent with CD. Skin biopsies documented neutrophilic vasculitis consistent with pyoderma gangrenosum, and lesions were thus interpreted as an extraintestinal manifestation of CD.

https://bmcpediatr.biomedcentral.com/articles/10.1186/1471-2431-14-156
 
I was on EEN when I was young. Did it as exclusive food for 8 months, and it worked terrific, then I reintroduced one meal by day and slowly got back to normal food. Had no long term impact at all, but only big health improvements. I got back my normal life thanks to EEN.

I don't think a child can become depressed because of EEN, the benefits are much greater compare to IBD symptoms.

I think your idea is very good to keep him on EEN till december, the more he stays the more benefit he'll get. Also 80/20 % balance with normal food are less effective, so it's much better to stay on total EEN for at least 3 months.
 

my little penguin

Moderator
Staff member
Guerrero

The latest studies from the large children's hospitals in the US
Such as Boston children's and children's of Philadelphia both now recommend 80/20 or 90/10 for longer term maintenance for kids
After they do 100% een to induce remission
The standards have changed even since Ds was dx 7
Years ago
 

Maya142

Moderator
Staff member
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.
 
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?
 

Maya142

Moderator
Staff member
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.
 
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.
 
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.
 

my little penguin

Moderator
Staff member
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
 
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!
 

Maya142

Moderator
Staff member
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.
 
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!
 
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.
 
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!
 

Maya142

Moderator
Staff member
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.
 
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!
 
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.
 
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.
 
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....
 
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!
 
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!
 

Maya142

Moderator
Staff member
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.
 

my little penguin

Moderator
Staff member
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
 
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.
 
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.
 
Mesamalmine-pentasa etc (5-asa) are Not FDA approved or recommended as a monotherapy for Crohn's disease

Most GI equate 5-asa to giving aspirin for a brain tumor
Not going to help much but not going to hurt either

5-asa only treat the top surface of the intestine and leave the lower layers to simmer with inflammation
Crohns affects all layers of the intestine not just the top
UC only affects the top layer
5-asa are very effective in UC
Hello, MLP, Maya,et al. My son was checked and the mucosal was healing with 8 weeks EEN via enteroscopy two weeks ago. The results are very good. Last Monday he started the Imuran 2/3 piece. His doctor asked him go back to hospital next week Monday and check the blood again.
As MLP said, no enough evidences show the SCD diet can fundamentally improve the CD patients. Of course, she suggest that SCD diet can try and detect the blood changes regularly.
I will start the SCD(chinese style) with Imuran since December.
Thanks all of you again with your helps and suggestions! Wishing you the best of health and Success!!!
 
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