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Crohn's Disease Forum » Parents of Kids with IBD » When to check other family members


01-12-2012, 09:29 AM   #1
hearts2mend
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When to check other family members

Hi all...

I am just curious if, after crohn's diagnosis, you had other family members checked. JW, who is 17, was luckily suspected of crohn's a year ago when having an appendectomy and has now been confirmed by biopsy. The doctors always ask if anyone else in the family has CD.

My concern is that because JW and his younger brother Jarod (13) had positive celiac bloodwork, and dad has confirmed celiac by biopsy, we could be missing something with Jarod. The problem with Jarod is that he was born with a complex congenital heart defect and has already had 3 open heart surgeries, but also has cerebral palsy, severe asthma and Hashimoto's thyroiditis. His pain tolerance is so high given all he has been through, that there are many times he is very sick but doesn't tell anyone he feels so bad until he is in need of a hospital admission.

Jarod has not been himself for a couple of weeks, feeling extremely tired and irritable. He also has a lot of diarrhea but I have always attributed it to the gluten until now. His thyroid is stable as we just had it checked this week and he is not on steroids now for his asthma to explain the irritability so I guess I am just fishing right now. Jarod is a very happy child so I know something is up with him.

Thanks for any insight you can provide!
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Steph

Married to John and mom to 2 amazing boys! JW ~ 17, Diagnosed with Crohn's 12/11, currently on Asacol and Remicade and Jarod ~ 13, living with Hypoplastic Left Heart Syndrome (HLHS), cerebral palsy, asthma and thyroiditis


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Last edited by hearts2mend; 01-12-2012 at 01:31 PM. Reason: Sorry, I believe I hit wrong sub-forum
01-14-2012, 10:13 PM   #2
mickey
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I would also look at diet. Perhaps there is something you are all sensitive to, yet maintain in your diet (i.e., gluten, wheat, corn, dairy, etc...)? Also look at the drinks (no carbonation, glucose, no diet drinks)....as they can be the culprit. Sounds like you have your hands full! Take care. You can have him tested, but it can also be a flu bug going around. Keep an eye on him; he sounds like a tough little guy!
01-15-2012, 02:37 AM   #3
DustyKat
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The only other person in our family, apart from my children, that has CD is my husband's cousin. When my daughter was diagnosed in July 2006 I never thought to have my son checked and over the ensuing years I think I convinced myself that she was going to be it in our immediate family. Then in November 2010 my son had some very, very mild symptoms...a couple of random vomits and lack of appetite over the course of a week...that was it. I can't say that CD popped into my head but I guess something at the back of my mind must have been niggling at me and I asked the GP to run inflammatory markers on him. They were elevated and within two weeks he had his diagnosis.

I would trust my instinct Steph and maybe get some simple testing done.

Dusty. xxx
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01-15-2012, 06:24 AM   #4
Dexky
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I agree with Dusty, Steph. With all Jarod has on his plate already, he can ill afford any hidden, untreated inflammation going on! I know you don't want to put him through any more med procedures than necessary but you don't want to look back and say "I should have" either. Good luck!
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01-15-2012, 11:13 AM   #5
kimmidwife
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I have to agree with the others. Have him checked out. What can it hurt? If it comes back negative great! If positive at least you can start to get him treated right away. I know it is scary. Especially he has so many other issues going on. But it probably is the best thing for him to be checked.
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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.
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