Crohn's Disease Forum » Parents of Kids with IBD » Concerned Parent - Need guidance in steps to diagnosis

10-11-2017, 07:54 AM   #1
joeyme1's Avatar
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Concerned Parent - Need guidance in steps to diagnosis

Hi Everyone. I'm writing in about my 8 year old son who has long suffered from severe abdominal pain in the mornings. I started a food journal for him and that led me to remove dairy in the mornings. That was working for about 10 days and now the pain is back. Red flags go up because I have been diagnosed with Crohn's Disease since 1993. His pediatrician has written off the issue as something minor, like it's normal for kids to have this kind of abdominal pain. Being that acute and severe abdominal pain is my son's only symptom, I don't want to jump to the conclusion of CD. But, I know that with my history and his symptom, he has more than just tummy aches.

So, I'm asking all you expert parents out there - What steps do you recommend I take to get my dear son feeling good again? If you were in my shoes, what things would you be doing?

Thanks for reading. I am so concerned for my boy's well being.
10-11-2017, 08:03 AM   #2
my little penguin
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Fecal caloprotectin is an easy non invasive stool test
See a pediatric GI at university pediatric hospital
Even if it isn't ibd they can help you
Vs it's just a kid thing

We were told Ds was " normal " by the Despite abdominal pain
Rectal prolapse and later vomiting every two weeks
The GI took it seriously and eventually he was dx at age 7
Good luck
DS - -Crohn's -Stelara -mtx
10-11-2017, 10:41 AM   #3
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Sorry you are going through this, my husband and son have Crohn's when my son started have tummy pains every day, we did the same and cut out dairy (especially since I'm lactose intolerant).
His Ped immediately ordered labs to check CRP and ESR which ended up being elevated (probably the only time since diagnosis that has been the case) FC was not a test that was used when he was first diagnosed but he has since had several of them and they tend to show inflammation when blood test do not at least for my son. So I agree with MLP as it's a good place to start.
When labs showed inflammation the first time they immediately moved forward with scopes based on family history which confirmed diagnosis.
My younger son begin having stomach pains daily and ped immediately begin labs, his did turn out to be lactose intolerance but they did do FC on him and blood tests which neither showed any inflammation.
Hope you get answers soon.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
10-11-2017, 12:00 PM   #4
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Thanks for the replies so far. Is there a test for lactose intolerance other than just observing the pain when he has milk products?
10-11-2017, 01:25 PM   #5
Jmrogers4's Avatar
Yes, there is a blood test and a breath test, he did the breath test had to drink something with lactose and then they measure for something, I can't remember what it was but if you have a high level then not absorbing, digesting lactose and if it's not present then no lactose intolerance.
10-11-2017, 04:01 PM   #6
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They can also do biopsies during scopes (an upper endoscopy) and test those for lactose intolerance (I believe they test for the lactase enzyme - if it's low, then the kiddo is lactose intolerant).

I would agree that he needs to see a pediatric GI. A fecal calprotectin test is a good place to start - it will tell you if there is any inflammation in his gut. If it's high, then they will probably do scopes.

My daughter's main symptom at diagnosis was abdominal pain. Besides that, she had occasional constipation and weight loss. I was SURE we were being over-cautious and ruling out Crohn's with scopes. I was very wrong!!

There are lots of things it could be, including a food sensitivity or intolerance, but given your history of Crohn's, I agree that you need to investigate further.
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
10-11-2017, 09:23 PM   #7
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Just sympathizing. My 9 year old son has had abdominal pain every day for 2 months. His sister has Crohn's. The nurse practitioner thinks he has GERD. The only test they ran was a hemiscreen (looks for hidden blood in stool).
Going up the ladder to the Family doctor next week. Maybe we could get at least esr and crp tested.
Hello people! These kids are red flags! Drives me nuts. I hope you get through the diagnostic process quickly.
10-14-2017, 11:40 AM   #8
Lady Organic
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I'd go for a calprotectine test with no hesitation.
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-16-2017, 12:01 AM   #9
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I'd see a pediatric Gi, especially since this has been going on for awhile and there is a family history. Let us know how it goes!
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
10-16-2017, 07:16 AM   #10
joeyme1's Avatar
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There's a lot of helpful info in this thread. Since my last post, I eliminated all dairy from his diet, not just the morning dairy. So far, so good. I'm following up with the doctor in a week. If my son has any pain still, we're going through all the tests mentioned above.
11-29-2017, 04:43 PM   #11
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Just read your posts, what a wealth of information you have received!! You can have a celiac panel run too, that can give you some information but like the others have said. He needs a CBC, CRP, Fecal Cal. I would switch pediatricians too!! It is not normal for kids to have stomach pain off and on frequently. My son had similar problems and I got similar advice constipation etc. I know most of the time it is and most kids are healthy but having a family history and having a ongoing issue are red flags. Let us know how he is doing and if you got any answers.
Blessed mom to 3
Jaden-Chrons 15
Drew-Chrons 13

Crohn's Disease Forum » Parents of Kids with IBD » Concerned Parent - Need guidance in steps to diagnosis
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