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Crohn's Disease Forum » Parents of Kids with IBD » Which lab result is your child's best indicator of flare?


 
12-06-2012, 01:03 PM   #1
Mehita
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Which lab result is your child's best indicator of flare?

In another post, there was a discussion of Crohn's sometimes being a silent disease. Child feels great, labs/scopes/MRE's are horrible... or vice versa. What is your experience? What is your indicator that something is up?
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
12-06-2012, 01:12 PM   #2
imaboveitall
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HAhahaha... Mehita...welcome to my personal hell...and that of many others I'm learning...

Read my thread on V if you feel like it...she is a big, healthy looking ox, eats like a teamster, has PERFECT stools 1xday, NORMAL labs, but her small bowel is a freaking MESS.
Now this does not of couse apply to all. But it does to many.
Just to say...what you shall hear from others will mean essentially nothing.
This is the most screwed up nonsensical disease ever.

Cannot go by labs, cannot go by symptoms apparently for V...cannot go by imaging as per MLP's boy and Dusty's...

You shall drive yourself crazy trying to make sense of it. Trust me, I am halfway there
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12-06-2012, 01:15 PM   #3
acheallova
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Mehita,
This can be a very tricky question. As everyone is different, markers may not even show anything during a flare for some but the symptoms are predominantly present. Alternatively, symptoms may be very minimal, but sed rate, crp ( C reactive protein), low iron, low vit d, low b12, low magnesium, elevated liver enzymes ( alt, ast)depending on medications may be prominent, causing fatigue, lack of ambition or low energy levels. Muah- hugs-
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12-06-2012, 01:53 PM   #4
kimmidwife
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Mehita,
As the others said it is very tricky. I think a good indicator is the fecal Calprotectin to start with. It seems to be one of the most accurate ways to indicate inflammation in the bowel that is the least invasive. For many it seems to be more accurate then blood work. Of course the best thing really is a colonoscopy but of course it is more invasive and cannot be done as easily as the fecal calprotectin or blood work.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.

Last edited by kimmidwife; 12-06-2012 at 01:53 PM. Reason: wrong word
12-06-2012, 02:49 PM   #5
Farmwife
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I think what you want to know is signs, right?

Grace is one of those unfortunate ones that don't reflect in her labs.

She usual will slow her eating. Plus she won't let me out of her sight.
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12-06-2012, 03:15 PM   #6
Mehita
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I know this is a tricky question and different for everyone. I just wanted to put it out there to hear everyone's stories.

Labs haven't meant much for us. They fluctuate so much and never seem to coincide with how he's actually feeling physically. At least not in a logical manner. On a positive note, it's forced our GI to be more open minded.

Our big indicators are a slow, but constant increase in vomiting spells, constipation and moodiness. Unfortunately, sometimes these indicators are only identified in retrospect... so now I just freak out at the first sign of any of them
12-06-2012, 03:16 PM   #7
DustyKat
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Hey Mehita,

Ah yes, the one time when you crave the lack of individuality and you get the opposite! Exceptionally maddening for me as my two's disease, in a physical sense, mirrors each other exactly but when it comes to clinical presentation they are poles apart.

Sarah:
Sarah's symptoms were atypical of Crohn's for much of her pre diagnosis period, hence Crohn's wasn't on the radar. She never had scopes done. She did however have numerous blood tests and imaging that included ultrasound, nuclear imaging, abdominal X-Ray and abdominal CT Scan. In the 18 months that she was undiagnosed she only had two blood results that were abnormal. 10 days out from emergency surgery she was admitted to hospital with pancreatitis as her pancreatic enzymes were significantly elevated. This was a red herring as they were normal the next day. The night before surgery she was admitted again and her WCC was 18. They took her to theatre for an emergency laparotomy and found a ruptured and infarcted bowel with a large amount of free pus throughout her abdominal cavity.
The physical symptoms Sarah exhibited had were her indicator that things were not right. In those last 10 days she had diffuse abdominal pain, vomiting and fever. As you can see even in this dire situation her WCC wasn't extreme.
So in Sarah's case I always look to her physical, in your face symptoms and track those. After what I went through with her I don't think I will ever truly trust blood results with her again BUT that does not stop me clinging onto normal results anyway!

Matt:
Typical presentation of Crohn's except for the diarrhoea and blood that most docs look for. Diagnosed very quickly, Sarah's legacy no doubt, and his bloods show everything, even before he feels it!
Remember Sarah...gut an absolute battle field...WCC 18, CRP normal...well...
Matt had a microperfortion and an abscess and his WCC was 35 and CRP about 360. So for him his bloods are very true and accurate representation of what is happening with him and I pour over them lovingly every time he has them done.

Dusty. xxx
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12-06-2012, 05:50 PM   #8
my little penguin
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Can you say normal...
That would be DS.
Blood work almost always normal highest his sed rate went was 34 and he was inflamed from one end to the other.

Upper Gi/ sbft, ct scan , mre , fecal calprotectin - all very normal
First scope looked almost normal - biopsies proved otherwise.
For us we have to watch like a hawk. For
Constipation
Nausea
Chronic vomiting
Abdominal pain
Tenmnsus
Joint pain
Vasculitis
Night sweats
Mouth ulcers
Lack of appetite
Weight loss
Blood in stool( sometimes)
Foot pain
Numerous bathroom trips
Moaning in sleep
Fecal in continence
Rectal prolapse .

So when the above start happening we - know "It's Back"
Right now he is great on remicade but when It wears off he adds back on one to two symptom a day or so.

We still do blood for fun.
Fecal calprotectin is more useful for colonic disease than small bowel.

They only test he did not have was a pill cam.
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12-06-2012, 06:06 PM   #9
jmckinley
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Ryan's CRP and SED rate are good indicators of a flare, but there are other things that lead me to ask to have tests done. With Ryan, he gets pale, gassy, tired, inattentive, his hands get really dry, loses a few pounds...those things usually tell me something is going on.
12-06-2012, 06:16 PM   #10
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C's CRP and SED are never good indicators of a flare. He does show mild anemia in lab work during a flare so I guess there is that but his fecal calprotectin shows an accurate representation to what we are seeing when he is in a flare.

Usually, we just look out for ulcers, night fevers and fatigue because that has been how it always starts.
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C age 19
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12-06-2012, 06:56 PM   #11
kimmidwife
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Actually MLP the studies are showing that the fecal calprotectin is equally good for both small and large intestine disease:
Fecal calprotectin is equally sensitive in Crohn's disease affecting the small bowel and colon.
See article:
Jensen MD, Kjeldsen J, Nathan T.
Source
Department of Internal Medicine, Section of Gastroenterology, Lillebaelt Hospital Vejle, Vejle, Denmark. [email protected]
Abstract
OBJECTIVE:
The utility of fecal calprotectin (fCal) in small bowel Crohn's disease (CD) remains to be clarified. The primary aim of this study was to determine levels of fCal in CD restricted to the small bowel compared with CD affecting the colon, in patients undergoing their first diagnostic work-up. In addition, the study assessed the sensitivity and specificity of fCal in suspected CD.
MATERIAL AND METHODS:
A total of 83 patients referred to gastroenterology out-patient clinic with suspected CD were included in this prospective, blinded study, and fCal was measured during diagnostic work-up. Ileo-colonoscopy + capsule endoscopy/surgery (n = 81), ileo-colonoscopy + upper endoscopy (n = 1), and ileo-colonoscopy (n = 1) served as gold standard for the presence and location of CD.
RESULTS:
A total of 40 patients were diagnosed with CD: small bowel 13, colonic 16, and ileo-colonic 11. Levels of fCal were equal in patients with small bowel or colonic CD: median 890 mg/kg and 830 mg/kg, respectively (p = 1.0). With a 50 mg/kg cut-off, CD in the small intestine and colon was diagnosed with 92% and 94% sensitivities, respectively, and the overall sensitivity and specificity of fCal was 95% and 56%. In this cohort, CD was ruled out with a negative predictive value of 92%.
CONCLUSIONS:
This is the first study to show that fCal is equally sensitive in colonic and small bowel CD. In patients suspected of CD, fCal is an effective marker to rule out this diagnosis and select patients for endoscopy.
PMID: 21456899 [PubMed - indexed for MEDLINE]
12-06-2012, 06:59 PM   #12
Clash
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I know C's active CD at the time of dx was located in his TI and the FC level he had during the last flare(within the last two months) was 1200 and the GI did say that he thought the FC test was an accurate test for inflammation with him as the CRP or SED hasn't been.
12-06-2012, 07:39 PM   #13
my little penguin
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The study I had seen was different .
It wasn't used to screen for Ibd as the study you sited but to reflect disease activity it was more accurate in the large colon than the small bowel.

I will try to find it.
It may be outdated ......
12-06-2012, 07:50 PM   #14
my little penguin
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. Calprotectin correlated with C-reactive protein in inflammatory bowel disease (p=0.001), and clinical disease activity in ulcerative colitis (p=0.017), but not with disease activity in Crohn's disease
From:
Alan Bremner*, Sohere Roked, Rebecca Robinson, Ian Phillips, Mark Beattie
Article first published online: 2 JAN 2007

DOI: 10.1111/j.1651-2227.2005.tb01870.x
12-06-2012, 09:51 PM   #15
kimmidwife
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hmmm MLP your study was published in 2007. I am going to see if I can find a date on the one I quoted as I do not see it.
12-06-2012, 09:53 PM   #16
kimmidwife
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Found the date at the top:
Scand J Gastroenterol. 2011 Jun;46(6):694-700. Epub 2011 Apr 1.
Published in 2011 so I guess it is newer research. I actually saw quite a few articles talking about it being used in all IBD so I guess that is the new way they are using it.
12-06-2012, 09:56 PM   #17
AZMOM
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Fecal calprotectin has been a good indicator for Claire. ESR too. B the time its up though, we're already in trouble. Her CRP has ALWAYS been normal.....

Hugs,

J.
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12-07-2012, 12:22 PM   #18
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Ferritin is our canary in a coal mine. That and growing fatigue that causes him to skip normal activities or find them hard to do and also make him more irritable than usual.

Our doc doesn't do fecal calprotectin and our insurance won't cover it so I can't say whether that would be a leading indicator or not.
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Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
12-07-2012, 01:32 PM   #19
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Oh yeah I forgot ferritin, it is a good indicator for C, too. If it starts trending downward then well the phrase "hell in a bread basket" comes to mind.
12-07-2012, 03:54 PM   #20
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Usually, Alex looks and feels fine, but labs show otherwise. He seems to be worst off with high SED, gets lethargic, anemic.
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12-07-2012, 07:42 PM   #21
acheallova
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If fcal isn't available, iron levels are a decent indicator with signs of fatigue and weakness.
12-07-2012, 09:29 PM   #22
Catherine
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I think maybe with Sarah rising ferritin with falling hemoglobin levels is bad. And low ferritin is not good either.

Ferritin is the best marker but it all over the place.
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12-08-2012, 02:18 AM   #23
Dutch941
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Kimmidwife......our labs are currently (knock on wood) all excellent.....the ones Left dangling are fecal cal and lactoferrin.....lacto ferrin was positive, however, the doc says this is an unreliable test....the calprotectin he has ordered again....BUT he says it really isn't bad.....it's like 260 and he says that while the norm would be below 160 he is not concerned and that someone with a UC flare would be over 1000 or more and that would concern him....what say you?
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12-08-2012, 05:22 AM   #24
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The only test that ever showed anything was the faecal calprotectin. Everything else was and is fine. Now we have the anal fistula and every lab is still fine, so the MRI was the only way to tell.
12-08-2012, 08:32 AM   #25
izzi'smom
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Our labs show very little rhyme or reason, although we've never had faecal calprotectin done. CRP has been over 60, but not necessarily when she was her sickest. Plus her scopes don't always reflect her condition either.. Her doc calls her an enigma.
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12-08-2012, 10:13 AM   #26
my little penguin
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Dutch
The fecal cal numbers range change at nine .
Anything above 50 is considered abnormal then. Under 9 something like 100 or 150(?)
However we did have one Gi tells us he dies not get concerned until the number is over 200 in an Ibd kid even then only slightly.
12-08-2012, 12:49 PM   #27
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I wish I knew the answer to this question. I think I would say Fecal Cal. He has only had it tested twice 586 (August) and 420 (October). So I am interested to see what the trend is going forward.

His sed rate was 36 at diagnosis (0-15 range) and is now 10 (0-10) range. But it seems to me that he can have normal range results and still have inflammation going on. The Dr. seems satisfied he is in the normal range for labs but should I be satisfied with those numbers? Dutch our Dr. seems to agree with you, he doesn't get concerned until the number is in the 1000 range for Fecal Cal. Concerned enough to do a med change anyway.
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12-08-2012, 03:52 PM   #28
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Do you find that the symptoms/signs (whether they are lab or stool results or noticeable signs like night sweats, ulcers or lab results) of a flare are consistent from flare to flare?
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12-08-2012, 04:04 PM   #29
izzi'smom
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NOPE! Fatigue, bloody, loose stools, pain are not mirrored by anemia, CRP, or better/worse visual inflammation via scope. Crazy disease.
12-08-2012, 04:21 PM   #30
Tesscorm
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Angie, I didn't mean if visual symptoms were consistent with labs; I meant if you see the same symptoms at the start of each flare? For example, Stephen had ulcers, fever, night sweats, etc. and labs were indicative that something was wrong but he had no ab pains, joint pains, no eye pains, etc. - could I anticipate that it would be typical for him to show some of the same symptoms?

Or do you find that each flare is preceded by different crohns/eim symptoms each time?
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