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How many families have more than 1 child diagnosed with IBD?

My 13 year old son was just diagnosed with Crohn's last month after a 2+ year journey to determine the cause of his delayed growth and chronic constipation. Because he has very few symptoms, I am worried about my other 2 sons (12 and 15 years old).

Do many of you have more than one child affected?

Should I have my other 2 kids tested or wait until symptoms come up?

I feel so guilty for not picking up on some of his non-traditional symptoms and don't want the same thing to happen to my other kids.
 

Catherine

Moderator
Hi

I have one child dx with Crohn's and concerns about another.

I am subjecting my two other children to yearly blood tests to easy my mind.

My middle daughter has another medical condition will requires yearly blood tests and the doctor will add B12, folate, iron and vitamin D to that testing.

My youngest daughter has low iron and low vitamin d of unknown origin that we are currently treating.
 

my little penguin

Moderator
Staff member
Two kids
one with Ibd
One without

The first sign of trouble DS's Gi had second kiddo in for a quick appt and scope in less than a week.

In the future I will just ask for fecal caloprotectin /blood test

But DS had atypical presentation and close to normal bloodwork .
 
Two kids, youngest dx'ed with CD over 2.5 years ago oldest has started with GI issues and having investigative tests.

My husband(step father to my kids) has a brother who has 3 daughters(all young adults) and the oldest and middle daughter have CD.
 

DustyKat

Super Moderator
I have two children and they both have Crohn’s.

My daughter was diagnosed first but I didn’t have any testing done on my son. I did however keep an eye on him and when he did have one week of mild symptoms I had blood done, primarily for inflammatory markers. His CRP was raised and he had a diagnosis within two weeks.

I think you need to do what give you the most peace of mind mum. :ghug: I personally don’t think you will overlook things with your other two as your instinct will kick in if it is needed and you can start with the more non invasive tests at that point.
If you felt it was worthwhile perhaps you could have Prometheus testing done to see if there is a likelihood that they have markers for IBD. Like any testing it isn’t foolproof and having a positive result doesn’t mean that a person will develop the disease but it may give you some direction and control.

Dusty. xxx
 
I have four kids. #'s 2 and 3 have Crohn's. I'll tell you the dx for child #3 was a heck of a lot quicker than for Child #2 ("Hi, GI clinic. It's Mrs. G. It looks like we might have the family plan going on. How soon can you get my younger daughter in?" I called Friday afternoon at 4 pm and they fit her in on Monday).

When my youngest started having GI problems last year, we all assumed it was Crohn's. When the dr. scoped, even he was surprised when it was celiac disease. He hadn't even done the blood work for celiac yet, as we all "knew" what it was!

I agree: get your mind eased. Have blood work (I'm kind of surprised that a doctor might scope with no symptoms and no blood work coming up wonky, My Little Penguin. Glad everything turned out okay!)
 
I have two kids both diagnosed with Crohn's disease. My son was diagnosed first at age 7 and he is 15 now. My daughter is 23 and was diagnosed at 21. My son's Crohn's is a lot worse than my daughters. Wish no one had this disease but since that isn't a reality I wish my son's was mild like his sister's:( Sad that this is a wish.
 

Jennifer

Adminstrator
Staff member
Location
SLO
One of my sisters also has Crohn's. We were sick at the same time but I got worse than she did and was hospitalized for a long time. My sister kept some of her symptoms hidden for a few months because everyone in the family was so focused on me yet she eventually came clean and was diagnosed fairly quickly.

I guess my point in bringing that up is to start testing early if another child is showing symptoms so they don't get worse. Hope they don't have IBD though. :hug:
 
2 kids oldest with Crohn's, was worried about the younger one several years ago when he started having gastro issues, had all the labs short of scopes and the prometheus diagnostic (figured he most likely had the gene for crohn's since both dad and brother have crohn's) and they were all normal except he is lactose intolerant. But my older always has normal labs so we've looked to other factors and younger son has normal appetite and is growing and maturing on track. Once we cut out dairy the gastro issues went away but we are always watchful anyway
 
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