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09-21-2017, 09:39 AM   #1
richard1353
 
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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!
09-21-2017, 10:47 AM   #2
my little penguin
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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A child can become bitter withdrawn depressed etc because the desire to eat solid food is always there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?
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09-21-2017, 10:57 AM   #3
my little penguin
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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/
09-21-2017, 11:09 AM   #4
Maya142
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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?
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Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-21-2017, 11:34 AM   #5
richard1353
 
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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.
09-21-2017, 11:44 AM   #6
Maya142
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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?
09-21-2017, 12:15 PM   #7
my little penguin
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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...
09-21-2017, 12:39 PM   #8
richard1353
 
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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?
09-21-2017, 12:42 PM   #9
Maya142
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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.
09-21-2017, 12:44 PM   #10
richard1353
 
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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.
09-21-2017, 12:45 PM   #11
my little penguin
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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.
09-21-2017, 12:46 PM   #12
Maya142
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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.
09-21-2017, 12:47 PM   #13
richard1353
 
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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.
09-21-2017, 12:54 PM   #14
richard1353
 
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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.

Last edited by richard1353; 09-21-2017 at 01:49 PM.
09-21-2017, 02:59 PM   #15
my little penguin
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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
09-22-2017, 12:46 PM   #16
richard1353
 
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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.
09-22-2017, 01:48 PM   #17
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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.
09-23-2017, 07:59 PM   #18
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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!


09-23-2017, 08:24 PM   #19
Maya142
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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).
09-23-2017, 11:10 PM   #20
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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.


09-24-2017, 01:46 AM   #21
richard1353
 
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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.
09-24-2017, 02:49 AM   #22
richard1353
 
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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.
09-24-2017, 08:27 AM   #23
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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.


09-24-2017, 08:41 AM   #24
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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.

Last edited by richard1353; 09-24-2017 at 09:54 AM.
09-24-2017, 10:02 AM   #25
my little penguin
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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
09-24-2017, 10:05 AM   #26
my little penguin
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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
09-24-2017, 10:07 AM   #27
my little penguin
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5-year-old Italian boy was admitted to our Pediatric Gastroenterology Unit with a presumptive diagnosis of metastatic Crohnís disease (CD) or cutaneous manifestations of inflammatory bowel disease.The patientís 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 patientís 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...71-2431-14-156
09-24-2017, 12:11 PM   #28
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Thank you very much! my dear MLP!
My son only had endoscopic skip lesions and no granulomas, but his doctor said they can confirm the CD combined with clinical information.
So I want to change the another hospital in order to find the better treatments in December.
Thanks again for every person's helps!
09-24-2017, 03:42 PM   #29
Guerrero
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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.
09-24-2017, 03:49 PM   #30
my little penguin
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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
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