Crohn's Disease Forum » Parents of Kids with IBD » Was your child <5 when diagnosed

06-09-2013, 04:30 PM   #1
Join Date: Feb 2012
Location: austin, Texas

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Was your child <5 when diagnosed

I am curious about your child's disease progression if he/she was diagnosed at less than 5 years old. I just read an article (can't find it again now) that said there was some thought that the disease was a different type when dx'd so young. In my daughter's case, she was dx'd just before 3, with symptoms (diarrhea) starting at 2.5. Despite acive disease in her colon and ti,she has no symptoms besides diarrhea (non urgent) and delayed growth. She is almost 13 now. For better or worse her disease has neither progressed nor gotten better. What has been your experience? Any similarities?
06-09-2013, 07:02 PM   #2
my little penguin
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Research section lots of papers
On growth in Ibd
As well as those under 5 at dx

DS was dx at age 7 so he doesn't fit.
DS - -Crohn's -Stelara -mtx
06-09-2013, 10:56 PM   #3
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Join Date: Oct 2011
Location: Michigan, USA
DD was 3 when diagnosed with UC. Never was controlled had a colectomy 6 month later and then j-pouch take down 2 months later. It defiantly didnt go as the doctors expected. She was considered mild and the meds made her have complete pancolitis. That's our experience.
06-10-2013, 12:38 PM   #4
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I have "only" 4 years experience after my son was diagnosed at the age of 26 months, symptoms started at the age of 22 months. Until now his disease has been very severe, only IVIG has relieved his symptoms...

Below a link to a very interesting article (although I was able to see only the first page):


Recent translational studies have provided new insights into pathogenesis, disease behavior, and treatment responses in pediatric Inflammatory Bowel Disease (IBD). Registry studies have identified distinct clinical phenotypes with increasing age of onset; this has led to a revision of the clinical phenotyping system, now termed the Paris classification system. It is recognized that there are infantile (age <2 years), very early onset (VEO, age 210), and early onset (EO, age 1017) forms of disease. Rare genetic mutations affecting anti-microbial and anti-inflammatory pathways have been discovered in infantile and VEO forms, while genetic pathways identified in EO disease have been similar to adult-onset IBD. Genetic and serologic patterns measured soon after diagnosis have been shown to be associated with more aggressive stricturing behavior; these patterns may now be used clinically to help predict disease course. More recently, clinical and genetic models have been developed that, if validated, could be used to predict treatment responses.
*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
06-11-2013, 12:54 AM   #5
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My daughter was just diagnosed last December at 13, but looking back, I think they missed her diagnosis at age 2 when they first worked her up for failure to thrive after a bad case of Rotavirus . Her course is similar to your daughter's but she also had abdominal pain and failure to go into puberty. A gluten-free diet has helped her control the diarrhea since age 8. EEN and 6MP seem to be helping the other symptoms as long as we can keep her out of stressful situations.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
06-11-2013, 07:02 AM   #6
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Grace is 4 and showed signs much earlier.
She also has no FFT.
She has however suffered from most of the EIM's.
She tends towards constipation and rectal problems.
As of last scope her damage is still at the microscopic level.
She's never had a MRE or pill cam.
I believe if she did we would see more damage in her small intestine.
Right now though, ignorance is bliss.
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,

Crohn's Disease Forum » Parents of Kids with IBD » Was your child <5 when diagnosed
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