Crohn's Disease Forum » Parents of Kids with IBD » Undiagnosed 6 year old *need advice*

05-02-2017, 06:25 PM   #1
Join Date: May 2017
Location: Bucyrus, Ohio
Undiagnosed 6 year old *need advice*

I am new to this site and I am looking for advice. Let me explain a bit of my 6 year old sons history. In November he came down with a stomach bug (fever, diarrhea, vomiting) and since that day he has not went more than 2 weeks without vomiting, diarrhea, or fever. So.eti.e the vomiting last for several days and some times he vomits once and is fine for several days. It seems if he gets a "cold" it lasts longer than a normal cold and it almost always ends with nausea, vomiting, diarrhea. And recently he has a fever for 4 days with no other symptoms. His primary care doctor did some lab work and at one time the WBC was elevated but went back to normal within a week. She referred to GI and he did bloodwork and abdominal US. Sed rate was elevated as well as elevated C-reactive protein. CT was normal and stool specimen was negative for inflammation. Now he wants to do a upper and lower scope to rule out Crohn's but I am on the fence because the CT on stool results. Would like to know what you all suggest? I hate to put him through something that isn't nesecary. Thank you in advance for any advice. Oh....scopes scheduled Monday so I need to make this decision soon!!
05-02-2017, 06:45 PM   #2
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Maya142's Avatar
Hi and welcome!
It is hard to say what is wrong without scopes. When you say his stool specimen was negative for inflammation, do you know if they did a Fecal Calprotectin test?

Bloodwork that shows inflammation could point to something inflammatory. However, as you probably know, an elevated ESR and CRP can also be because of a bug. Since your son has been sick on and off since November, it doesn't sound like it could be a virus.

Have they done stool tests to rule out infections?

CT scans can be used to diagnose IBD, but generally scopes are the gold standard. Fecal Calprotectin (if they did it) is usually pretty accurate, but false negatives are possible. You really need to have scopes to know if he has IBD. Small bowel imaging - generally an MRE or a pillcam - is also standard.

Since he has GI symptoms and he does have positive inflammatory markers, I think would do the scopes if I were in your shoes. There's no other way to know if he has IBD.

The prep is no fun but the actual procedure is pretty easy - just a nap.

Good luck!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-02-2017, 06:49 PM   #3
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Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

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Hi and welcome.
Sorry to hear about your little guy.
My Grace is 8 but was diagnosed at 3.
My girl never showed much in the way of labs or scans.
BUT the scopes told the story.
The gi even was surprised because he thought nothing was going to show.

Now this doesn't mean that your son has ibd but
if the gi suggest scopes, there's a reason.
They don't want to waste their own time.
Ibd and other bowel diseases are not something you want to get out of control.
The sooner you treat the better.

The scopes were the easy part.
The clean out was a little more challenging.
If you decide to go ahead with it, please feel free to ask for advice on how to make the clean out more bearable.
Lots of mamas and daddys that have been thru it all worth there kids.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
05-02-2017, 07:30 PM   #4
Join Date: May 2017
Location: Bucyrus, Ohio
Thank you both very much for your replies. Yes, they did do calprotectin and it was negative. He also did blood work for bacteria and stool test for infections all which were negative.
05-02-2017, 09:06 PM   #5
my little penguin
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Join Date: Apr 2012

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Scope could give you answers
Ds was dx at age 7
The scope itself is easy on the kiddo
They sleep
The parent not so much

Have you tracked fevers and patterns
Have they looked at periodic fever syndromes?

Scopes are still needed to rule out Crohns
But pfs would explained raised numbers then lower numbers
Somehave GI components so still need a scope

Good luck

Ds has had 7-8 scopes so far
No issues
DS - -Crohn's -Stelara -mtx

Crohn's Disease Forum » Parents of Kids with IBD » Undiagnosed 6 year old *need advice*
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