Crohn's Disease Forum » Parents of Kids with IBD » Unclear if my child has crohns?

09-03-2014, 09:38 AM   #1
Join Date: Sep 2014
Location: United Kingdom
Unclear if my child has crohns?

Hi there my daughter is 10 years old and since the begingin of the year she has been complaining of stomach pains, i notice she seemed pale and tired and she also told me she was going to the toliet 2-3 times a day and it was varying from loose stools to harder ones she seemed to have mouth ulcers all the time.

I decided to take her to the GP who took bloods and they were all normal and then they refered us to the hospital who ordered more bloods again and a calprotectin.

Bloods again all normal however she had a calprotectin of nearly 2000 so then we went in for endoscopy and colonoscopy with bioipsies....all looked normal and biopsy results normal. She then had an MRI scan of the small bowel...this showed a 5 cm area of inflammation of the terminal ileum. There was also and ultrasound scan which showed pockets of fluid in this area too.

After consultation with the doctors they have started her on NG tube feeding with modulen and taken another calprotectin....the results from this came back as 30 this time.

Her symptoms seem to have reduced over the last 5-6 weeks as she has been on holiday so no school which i think she finds stressful...she had only been on the modulen a day or 2 when the stool sample was taken but i doubt it would have reduced her calprotectin that quickly. The hospital still seem to think she has crohns but im confussed....anybody else out there had confussing results?
09-03-2014, 11:23 AM   #2
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CrohnsKidMom's Avatar
Join Date: Mar 2013
Location: (Canada), Nova Scotia

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Welcome to the forum, but sorry to hear of your daughter's illness. My 9yo son was dx'd last yr. His case is a little more "cut and dry", as his biopsies confirmed CD, but the symptoms sound similar: mouth ulcers, paleness, constipation, fatigue. Does the GI plan to repeat her bloodwork and scopes in the future? Sometimes this disease simmers under the radar. I know there are parents on this forum who have a "working dx" of CD, but biopsies did not confirm it. I am glad your daughter is doing better. I hope she is on the road to remission!
09-03-2014, 11:29 AM   #3
my little penguin
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Join Date: Apr 2012

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To have biopsies confirm crohn's there needs to be non caseating granulomas found period ( which is only found in 30% of the case).
Otherwise its a combination of tests to reach a dx.
Sounds like crohn's
We wanted it to be something else as well ( two second opinons )
Still crohn's .

Take it one day at a time
DS - -Crohn's -Stelara -mtx
09-03-2014, 01:48 PM   #4
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Join Date: Aug 2011
Location: Falkirk, United Kingdom

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My sons bloods were always normal. Before diagnosis his calprotectin was around 1600, 8 weeks of Modulen and it went down to 80. We went up medicated for around 6 months with no tummy issues, but his calprotectin went back up to 650 so had to start 6mp. Crohns is a confusing disease in general I think. Hope you get some definite answers
09-04-2014, 09:30 AM   #5
Join Date: Sep 2014
Location: United Kingdom
Thank you for the replies its such a confussing disease really especially where children are concerned. On the plus side my daughter is dealing with the NG tube and modulen really well and is feeling so much better just after 2 weeks treatment which is the most important thing.
09-04-2014, 09:59 AM   #6
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Join Date: Jun 2011
Location: Ontario

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My son also had some similar symptoms, although his bloodwork did indicate inflammation.

Re your question of your daughter's quick response/FC result... Although my son had been sick for two or three months, when he was admitted, he was given a week of Flagyl (antibiotic) and then started ng feedings. His symptoms disappeared almost immediately. Other than the time needed to regain lost weight, muscle, etc., he was back to normal within two weeks - starting back at phys.ed. classes and playing hockey. So, it is possible to have a quick, positive reaction to the feedings.

He never had a fecal calprotectin test so not sure how that would have been affected. I don't know how quickly the FC test responds to levels of inflammation but some tests do respond quite rapidly. My son's CRP went from 135.7 to 3.6 after 5 days of flagyl treatment only. (However, for comparison's sake, ESR takes longer to respond to changing levels of inflammation and, during the same week, it actually rose before beginning to drop a month later.)

It is a confusing and frustrating illness. It seems treatments, reactions, symptoms all vary from person to person and it, frustratingly, takes time to find the right signs that reflect how your daughter is doing.
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil

Crohn's Disease Forum » Parents of Kids with IBD » Unclear if my child has crohns?
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