hello all, I posted about a year ago, my son's colonoscopy showed self limiting colitis. I was not ready to do a pill cam or cte or mre and then he had 2 negative lactoferrin tests. (first was positive) also he started gaining weight after antibiotics to see if he improved (thinking SIBO) he gained more weight and we left it be (still had some symptoms just not as bad as now) and then recently he became worse. so now another positive lactoferrin again and they did more antibiotics. they want to repeat colonoscopy and I wish they would look at small intestines w pill cam or other test. he cannot do oral contrast cause he will have to be put to sleep (his autism is severe) she said they would only diagnose IBD with the biopsies and she did not think the small bowel tests would show enough. questions- can lactoferrin be raised with bacterial infections SIBO or other? (he had all the stool tests before for the common bacteria stuff ruled out) and also, has anyone been diagnosed by small bowel tests? andrews blood work is pretty good but ESR slightly raised once. also, split fats stool sample always comes back positive. all vitamin levels good. thanks so much for any advice, you all are so great! take care, Dawn (andrews mom)
Update, questions / my son with downs and autism
- Thread starter dpligon
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Help Support Crohn's Disease Forum:
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I don't have answers, just want to send my support! Our diagnosis has come through MRE & pathology (in colon) with colonoscopy. I don't know how they get samples from the small bowel easily. I always thought it was hard to get up that far with a colonoscpy.
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The lacoferritin test is just positive or negative - fecal caloprotectin gives a number which can be used to determine how bad the inflammation is.
Why not ask for both pillcam , upper and lower scope?
They can place the pill can while they are in there for the scope .
Sometimes the issue is at the top and sometimes at the bottom.
Also ask about an mre they still do these on little kids who need to be put under .
Our theory is if you are putting the kid out anyway let's get the info so we can make a good decision versus having to go back again .
Have you gotten a second opinOn at a larger Ibd center ?
Why not ask for both pillcam , upper and lower scope?
They can place the pill can while they are in there for the scope .
Sometimes the issue is at the top and sometimes at the bottom.
Also ask about an mre they still do these on little kids who need to be put under .
Our theory is if you are putting the kid out anyway let's get the info so we can make a good decision versus having to go back again .
Have you gotten a second opinOn at a larger Ibd center ?
thank you both for your response and support!
They are saying that they can't do pill cam during the scopes because of something having to do with the "air" they have to use for colonoscopy? not sure but they said they could do a separate pill cam later where they put him to sleep for a short time and then place the pill cam. I am so hating to have the colonoscopy and the wait is very long too.I agree, and don't know how they get so far up to get biopsies, glad you both have your diagnoses cause this seems so long in coming!
we have debated about and talked w cincinati children's (SP) I have a close friend who is there. we are vanderbilt and we have had some concerns. we are still 5 to 6 hours away
anyway, God bless you both and hope your kids are doing well, I do appreciate your taking the time to respond!
They are saying that they can't do pill cam during the scopes because of something having to do with the "air" they have to use for colonoscopy? not sure but they said they could do a separate pill cam later where they put him to sleep for a short time and then place the pill cam. I am so hating to have the colonoscopy and the wait is very long too.I agree, and don't know how they get so far up to get biopsies, glad you both have your diagnoses cause this seems so long in coming!
we have debated about and talked w cincinati children's (SP) I have a close friend who is there. we are vanderbilt and we have had some concerns. we are still 5 to 6 hours away
anyway, God bless you both and hope your kids are doing well, I do appreciate your taking the time to respond!They should be able to place the pill cam during scopes. This option was presented to us but my daughter was able to swallow the pill so we didn't go that route. Instead, she did the pill cam first followed by scopes. The reasoning behind doing the pill cam first was so the GI could be sure that what he was seeing was true inflammation/ulcers and not biopsy sites from the scopes.
DustyKat
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Ditto to all of the above mum. :ghug:
As to only diagnosing with a biopsy, well that need to look beyond that and be confident with what they see both clinically and objectively. Our GI diagnosed my son on the spot after his scope. Not everyone can be diagnosed via biopsy unless they tick all the boxes, and to then rule out IBD because they can’t is unfair to your son.
My son surely has Crohn’s but he couldn’t tick all the boxes via pathology, even with a great length of bowel removed during surgery! It was because he didn’t have granuloma’s present and that is the clincher as far as pathology is concerned. But if it looks like a duck, walks like a duck and quacks like duck, it’s a duck.
Good luck mum, I hope you soon find solid answers for your lad. :ghug:
Dusty. xxx
As to only diagnosing with a biopsy, well that need to look beyond that and be confident with what they see both clinically and objectively. Our GI diagnosed my son on the spot after his scope. Not everyone can be diagnosed via biopsy unless they tick all the boxes, and to then rule out IBD because they can’t is unfair to your son.
My son surely has Crohn’s but he couldn’t tick all the boxes via pathology, even with a great length of bowel removed during surgery! It was because he didn’t have granuloma’s present and that is the clincher as far as pathology is concerned. But if it looks like a duck, walks like a duck and quacks like duck, it’s a duck.
Good luck mum, I hope you soon find solid answers for your lad. :ghug:
Dusty. xxx
thanks so much Dusty, this group is amazing and I have learned a lot both times I have asked questions and just by reading! I just wish I could have another piece to this puzzle and that my son could tell me where it hurts, its okay though, now some obvious things are happening w his symptoms that cannot be ignored! take care and thanks for the kind words!
also mlp, hope I can find a way to get the cp stool test done next time, they are saying our insurance does not pay and seem reluctant to do it. thanks again for all your help!
God Bless!!
also mlp, hope I can find a way to get the cp stool test done next time, they are saying our insurance does not pay and seem reluctant to do it. thanks again for all your help!
God Bless!!
