Fecal Caloprotectin results

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my little penguin

my little penguin

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The FC results were posted and are <<15.64 ( lower detection limit).
So....
good its really low so Humira is doing its thing - never that low before:wine:

but why the blood blip a day and 1/2 after the FC sample if there was NO inflammation at all.:ybatty:

Also why all the joint issues if there was no other inflammation crohn's wise:voodoo:

"other IBD parents" don't understand why I am concerned or even think ds has crohns since his numbers are so good.:ymad:

That the fact that he has to wear hand splints and still has joint issues -- is nothing..
ummm... maybe because three separate GI's all dx Ds with crohn's over a 2 year span and maybe there is other stuff causing the joint things.
apparently Ds didn't read the memo.
but then again he never did.
just avoiding those "people" for now.


since you only have crohn's if your kids blood markers are sky high and you have constant bloody D.:tongue:

bad enough normal parents don't get it but jeez.
 
No idea MLP but sending hugs! Fwiw M had a calprotectin of 36 or something like that on Remicade.
Is it possible he's developing some sort of arthritis? Since the Crohn's seems to be mostly under control? Or could there be something else autoimmune going on?
 
Of course he has Crohns! The meds are working on his Crohns, that is why his numbers are good. Pull the meds and watch the dam burst!

He obviously has other issues though that need to be sorted out. So many auto immune comorbidities and they don't necessarily have to all flare at the same time. Poor pumpkin. It would be so much easier if the joint pain etc were totally Crohns related but obviously not. I sure hope they figure that part out fast and fix it.
 
Rheumo though it was crohn's related last visit.

I will give it time - since no swelling yet and he still functions plus he is on a biologic regardless.

Plus we are both "doctor" out..
maybe a second opinion at the end of the year if needed or things get worse.
 
Hmmm which leads me to a question...we all know normal blood markers don't necessarily mean things are a.o.k. inside...what about fc? I know it is a very good predictor of inflammation but can it miss inflammation as often as the blood tests do? His GI symptoms are good right? If so, I guess it isn't likely the CD is a problem but we have all seen here a few times, kids look and feel good, blood returns great but mess inside...not the usual but......
 
Since FC is a marker of inflammation what if there was a focal point that caused the bleeding that was not as a result of inflammation. Say a pseudopolyp or something like that?? Just tossing out ideas here.

The joint pain. If it is not located in the large joints then there is every likelihood it is running independently of his Crohn’s, just as AS does. Hence the fab GI results.

Dusty. xxx
 
I think we just have to wait in see at this point since it's not his spine for the most part or tendon areas . Just his hands ...
 
My heart (more than you know) goes out to you and your son.
It's horrible, frustrating and aggravating to have multiple things hurting your child. Some days it's just too much but we have to keep going.
 
Ok so couple of things
It could be his rectum again since fecal cal won't show it neither does blood markers and it has been his biggest pain in the "butt" since dx.
That said Gi wise he is fine didn't even have any complaints with the blood.
Since it stopped - letting sleeping dogs ly so to speak.


Hand neck stuff -after much research he may have early AS.
Seems the hands feet etc can be involved .
Didn't know that
But his Rheumo does have him doing all things that would treat it ,
Specific back exercises, hand exercise , pt ( swimming) ...
Added mobic so
I feel better waiting to see how things develop
Hoping that I am wrong and it will all disappear soon kwim
 
I know you've mentioned your son have skin issues -- any chance he's had psoriasis? Psoriatic arthritis is one of the spondyloarthropathies in which the hands/feet are involved often. That said, both my girls have AS and have stiff, painful fingers without swelling. So does my husband.
With kids often peripheral joints are the ones that affected first -- with M it was her knee and with my older daughter it was her knee and ankle.
Axial (spinal) symptoms tend to come later.
Has he ever had MRIs or X rays of his joints?

I really hope things will settle down on their own:ghug:
 
FWIW our GI has been adamant with us that if the crohn's is under control then the joint pain is not crohn's related.

Our Pediatrician mentioned Chronic recurrent multifocal osteomyelitis as a possibility for Johnny's pain. We never ended up doing an MRI to detect bone lesions because his pain got much better.

A few things that helped Johnny's pain were getting orthotics for his shoes (nothing custom made just something for extra support and cushion). We also have him do core strengthening exercises and got him a new mattress, this helped his back and knees. The ortho we saw said being on Prednisone weakened the ligaments and when his bones started to grow it put stress on his knees. He had knee, foot, and back pain.

Hope you get some answers soon. (((Hugs)))
 
my little penguin said:
but why the blood blip a day and 1/2 after the FC sample if there was NO inflammation at all.:ybatty:

Also why all the joint issues if there was no other inflammation crohn's wise:voodoo:
Click to expand...

I have so been there!!! :ybatty::ymad::ybatty:

I got no good answers from either GI or Rheumatology, just all grey area stuff. When my son's enthesitis is acting up Rheumatology says his Crohn's must not be under control but then GI looks at blood work and FC and says he is in remission. :ybatty::ymad::ybatty::ymad::ybatty::ymad::ybatty: I even had the GI nurse insinuate that putting him on prednisone for the pain in his heal was overkill, the kid couldn't walk or even rest his heal on his bed. And it's not like I want my kid on pred. :ymad:
 
I'm really sorry things are so confusing and I can definitely relate, having a "non-textbook child" myself. A's first FC level was 20. At that time she had raging erythema nodosum, bloody stools, diarrhea, and headaches/stomach aches so bad she would roll on the floor crying for hours. Her next FC level was in the 460s. At that time she had minimal diarrhea, mild joint pain, and the occasional bloody stool. Confusing to say the least.

While I'm glad that his labs don't indicate a huge problem, no child should have to suffer in pain. I hope you can get things figured out soon!
 
Lots of hugs. We have a similar issue with joint pain even though the Crohn's is in remission according to all testing. I have come to think it is just going to be and there is nothing we can do about it. :(
 
MLP - I'm behind......just catching up. Sorry the water is still "muddy" :ymad:

For the record, Claire's gut and joints don't always correlate. Now most recently yes, but not always!!

The FC has been a pretty reliable indicator of the gut though.

Big hug,

J.
 

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