Still confused

[katyc]

still confused

Because I have been asked by family members why they are doing scopes on jack if his primary said he tested positive with a blood test...

He test positive with an IBD panel 7 with the antibodies Cbir and fla.


But I cant find anything on those antibodies.....


What did your kiddos test positive for in the blood test???

On a side note we have rescheduled jacks scopes for the 16th....with just a one day clean out....hope he stays healthy enough to get the go ahead.....were staying at home until monday so he doesnt catch anything...

 

[Sascot]

Sorry can't help with the blood tests. My son's blood tests were always fine (and still are)! That's why it took the docs so long to diagnose.
Good luck for the scope.

 

[Dexky]

Katy, I don't know about the antibodies but I think the primary things the GI looks for on bloodwork is ESR and CRP. These are the inflammatory markers that show chronic inflammation. If these are high, they indicate inflammation. I don't think they necessarily prove IBD because other inflam. will also spike them, but do warrant further investigation, hence the scopes. Let us know how it goes on the 16th.

 

[imaboveitall]

You're talking about the Prometheus 7 which tests for seven serological markers for IBD.
Violet was NEG for all seven. I was told some with Crohn's will test neg (14%) but if they test POS they likely have IBD. There is no false pos. Over 80% w/IBD are pos for at least one marker.

Love to you and that baby...I so hope he gets diagnosed soon. Please mention mitochondrial disease and ask for a genetics consult.

 

[katyc]

You're talking about the Prometheus 7 which tests for seven serological markers for IBD.
Violet was NEG for all seven. I was told some with Crohn's will test neg (14%) but if they test POS they likely have IBD. There is no false pos. Over 80% w/IBD are pos for at least one marker.

Love to you and that baby...I so hope he gets diagnosed soon. Please mention mitochondrial disease and ask for a gentics consult.

We have state insurance cause Im a single mom and student so they wont do any gentics testing....espically since my doctor isnt very supportive...how do they do gentic testing???

Jack has been doing good with the dirrahea could that mean he just isnt having a flare up or doesnt have IBD at all???

Im so confused with all of this.......THANK you for your help!!

Can I get your email, Im losing my internet soon but have emailon my phone.

 

[imaboveitall]

God love you...your insurance shouldn't matter! If he needs it they will do it.
I don't know if we are "allowed" to put email addresses on here so PM me and I shall give to you. If you want to call me I'd be happy to speak to you, though I cannot officially consult on Jack, just advise as a "friend" on what to ask the docs to do.

In a baby who has presented from birth as he has with symptoms like you describe, a genetics consult is relevant and reasonable. I cannot imagine them refusing it.

 

[polly13]

Not sure that the blood work is definitive - also they will probably take biopsy during the scope to have a closer look at the cells. My understanding is that the scope is the most definitive diagnostic test. Also wouldnt take the primary care word for it would be much happier with a diagnosis from paediatric GI specialist.
Hope it works out ok for you.

 

[Jenn]

In Alex's case, the first bloodwork indicated inflammation and malnutrition, but wasn't enough to dx anything. Endoscopy/Colonoscopy with biopsy and upper-GI flouroscopy made the Crohn's terminal-ileum dx definitive. Now we do bloodwork monthly to monitor inflammation/nurtrition status and medication tolerance. Hope that helps you!

 

[DustyKat]

No experience with the Prometheus 7 here. My daughter had normal inflammatory markers and other blood tests for 99% of her pre diagnosis period. My son on the other hand had raised inflammatory markers from the outset.

Good luck with the scopes!

Dusty. xxx

 

[dannysmom]

Scopes are always important because the doctor can see and more importantly biopsy the tissue. Doctors want to know where the inflammation is because that can impact the type of medications used. MREs and Pillcams are also useful diagnostic tools. There can be false positives for IBD 7 ... or positive IBD7 without IBD. My son also had positive markers with a "pattern consistent with Crohn's" but is not diagnosed (yet?). His first colonoscopy did not show enough inflammation, or the characteristic inflammation associated with Crohn's. The reliability of the Prometheus tests are a bit controversial with doctors. Some doctors use them as just another diagnostic clue & we had one doctor tell us they were useless. If you google cbir1 you will see some information ... I usually use google scholar. cbir1 is related to bacteria flagellin.

I do not think that genetic testing has become standard practice for IBD yet. Prometheus offers a new IBD test that includes the antibody markers, inflammatory markers and several genetic tests.

 

[imaboveitall]

DMom, I meant genetic testing for chromosomal abnormalities/mitochondrial disorder, not IBD.
Baby Jack has a complicated hx that to me could indicate he has something else amiss.