Crohn's Disease Forum » Parents of Kids with IBD » How many families have more than 1 child diagnosed with IBD?

08-12-2014, 02:09 PM   #1
JenniferJuniper's Avatar
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Location: Pittsburgh, Pennsylvania

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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.
08-12-2014, 05:42 PM   #2
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Location: Melbourne, Victoria, Australia

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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.
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
08-12-2014, 07:11 PM   #3
my little penguin
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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 .
DS - -Crohn's -Stelara -mtx
08-12-2014, 07:33 PM   #4
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kimmidwife's Avatar
Join Date: Sep 2010
Location: Florida

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Have five kids. One child with Crohn's, worries about two others. Praying it is just a fluke.

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.
08-12-2014, 08:47 PM   #5
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Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

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∑ NG Tube
Two kids, only one as IBD but the other suffers w/ issues.
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,
08-12-2014, 09:09 PM   #6
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Clash's Avatar
Join Date: Apr 2012
Location: Georgia

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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.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-13-2014, 10:30 AM   #7
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Location: El paso, Texas

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Three kids, older no issues at all, middle one with crohn's, youngest one trying to find a DX.
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
08-13-2014, 11:25 AM   #8
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CrohnsKidMom's Avatar
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Location: (Canada), Nova Scotia

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We have 2 boys, our eldest has Crohn's, and so far no issues with our youngest.
08-13-2014, 03:54 PM   #9
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
I have two children and they both have Crohnís.

My daughter was diagnosed first but I didnít 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. I personally donít 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 isnít foolproof and having a positive result doesnít mean that a person will develop the disease but it may give you some direction and control.

Dusty. xxx
Mum of 2 kids with Crohn's.
08-14-2014, 06:13 AM   #10
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Sudsy's Avatar
Join Date: Aug 2013
Location: Israel
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!)
19 y/o dd dx'ed with Crohn's at age 8.

14 y/o dd dx'ed with Crohn's at age 7

11 y/o dd with Celiac just to keep things interesting around here....
08-14-2014, 08:19 AM   #11
Join Date: Sep 2010
Location: prestonsburg, Kentucky
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.
08-14-2014, 11:08 AM   #12
my little penguin
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Second kiddo presented close to same way as DS with Ibd which was why there was a scope .
08-14-2014, 05:30 PM   #13
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Location: California

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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.
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
08-17-2014, 10:48 AM   #14
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Location: Boise, Idaho

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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

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

Crohn's Disease Forum » Parents of Kids with IBD » How many families have more than 1 child diagnosed with IBD?
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