Crohn's Disease Forum » General IBD Discussion » Pectus carinatum w Crohn's


06-13-2018, 12:15 AM   #1
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Pectus carinatum w Crohn's

Hi, my 15 y old son diagnosed w Crohns almost 2 years ago now is doing very well from Crohn's perspective, we have had for the first time in 3 years 3 calprotectin values under 100 and he is back to Humira every 2 weeks rather than weekly. However he continues to have joint/bone pain. Had MRI and seeing rheumatologist for second visit tomorrow, she also ran a series of blood test so we will get some results then. I did hear from PCP that preliminary results of MRI normal. However, in the last 6 months, my son has developed Pectus carinatum and was just fitted for brace today. Cartilage still very flexible so surgeon hopeful he will have quick correction wearing brace if can wear the brace > 16 hours daily. He's frustrated and though has had an overall positive brave kick - a attitude about the whole Crohn's/chronic illness (he is way too mature on this), it's as though this chest deformity is experienced as quite challenging for him. Tough age, self conscious about appearance, shows a bit when wearing soccer shirt etc Curious if any other Crohn's patients out there w crossover of these conditions?
06-13-2018, 01:35 PM   #2
crohnsinct
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Join Date: Mar 2012
Location: California

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Sorry, I don't know much about this condition. You might have more luck posting in the parents sub forum but I will tag a few here in hopes that they will see this and help if they could.

my little penguin
Maya142
Farmwife
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-13-2018, 10:10 PM   #3
Maya142
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I had not heard of that condition and had to look it up. Poor kiddo. I hope the brace helps.

Did the rheumatologist see any signs of swollen/inflamed joints or tendons? There is a type of inflammatory arthritis that is associated with Crohn's - juvenile spondyloarthritis/enthesitis related arthritis (same condition, enthesitis related arthritis is just the newer name for it).

Where does your son have joint/bone pain? Which joints? What MRI did he have done?

Have you considered a psychologist to help him deal with the chest condition and the self consciousness? Poor kid - it's hard enough to be a teen and it's even harder with chronic illnesses. My daughter is a very complex kid and seeing a psychologist has really helped her.
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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
06-13-2018, 10:27 PM   #4
my little penguin
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I have heard of it from some folks
But not in association with Crohns
Definitely look more into JSpA
Normal mri is good thing
But doesn’t mean he doesn’t have JSpA causing pain as well

Ds has it
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