I have been learning so very much from you good knowledgable people, thank you already! My son Andrew is 16, non verbal, down syndrome, autism, scoliosis, history of antibiotics for ears, recurring staph infections etc. always diagnosed with IBS (constipation to lose stools) tried so many diets and supplements through the years.He has had episodes of hurting him self and scratching others in past and I was convinced something was hurting him. drs tried to find things but had to put him on risperdal to help him and it did help but I still pay close attention to medical issues. couple years ago,developed pilondonal cyst. (sp) very large but dr says they can just be there with no problems (agony for us and him, he cannot tell us what hurts) but I could tell not painful at the time. then around february this year, he began to get worse, couple of shaking episodes after meals, very loud rumbling, sleep bad, sometimes even breathing strange. dr says the main thing he noticed was his slow but sure weight loss through the years, so tummy exray, if no constipation, gi again (who did not really seem to help lately) so then gi does lots of blood work and stool samples, found inflammation in stools but blood work okay. wt. 102 at this time. she wants to do colonoscopy and endoscopy (had two endoscopies in past) and schedules for way down rode. in 3 months had next app. down to 97 pounds. anyway as time goes on fatigue getting worse and bless his heart, I tried to figure out pain from other things but so hard. usually hungry constantly except when tired and nausea come. we are at vanderbilt in nashville tn. tests were so very hard of course but they were done 2 wks ago. she says patches of red and biopsies say esaphagus normal, colon and illium of what they could see has patches of colitis that are self limiting. so will have more blood work, more stool samples and this time to find out degree of inflammation and to rule out parisites and bacteria. dont understand why these were not ruled out before. he also has unusual sores the nodule type that get ugly sometimes with head to them then turn dark but have returned. cyst (I mean abscess now) also gets better and worse, now is red and may have to go to dr. to check. she said they saw some of illiim sp? but to do the other tests to look at this my son would probably not be able to tolerate. wish I had the results in front of me and sorry guys so long, I feel I have so much in common with you all! these issues are formost in my mind, thank you for reading this crazy too long post, God Bless and would love some advise?
Complex 16 yr old (colitis? bacteria?)
- Thread starter dpligon
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I wanted to welcome you to the forum. I'm not great with the colonoscopy/endoscopy reports but I'm sure someone will be along shortly that can help.
You said he had a stool test that showed inflammation, was this a fecal calprotectin test? Did they happen to give you those results? Interesting that they are now doing another stool teat and blood work for level of inflammation, do you know what theses are?
I hope you are able to get some answers soon. I think a couple of our parents have been to Vanderbilt, maybe Dexy so I'll tag him. I'll tag MLP and Dusty as well, they are a wealth of info. Lastly, just wanted to send some hugs your way!
You said he had a stool test that showed inflammation, was this a fecal calprotectin test? Did they happen to give you those results? Interesting that they are now doing another stool teat and blood work for level of inflammation, do you know what theses are?
I hope you are able to get some answers soon. I think a couple of our parents have been to Vanderbilt, maybe Dexy so I'll tag him. I'll tag MLP and Dusty as well, they are a wealth of info. Lastly, just wanted to send some hugs your way!
Ditto to what Clash said... Welcome to the forum!
God bless!
God bless!
Oh thank you so much for your reply! they first did the stool test showing that there is inflammation but not how high. this time they will test (monday) the test showing how high. she didnt say biopsy showed how high the inflammation was either. blood work so far has not shown inflammation. (redoing this monday also)
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Hmmm...maybe my understanding of fecal calprotectin isn't accurate but I think the results come as a number that represents the level of inflammation so anything less than 50 is considered normal. Maybe there is another test(i know there is lactoferrin and not sure how its results come) that tests inflammation in the stool.
Sorry I couldn't be any more helpful but I'm sure other members will be by with a welcome soon!
Sorry I couldn't be any more helpful but I'm sure other members will be by with a welcome soon!
thanks so much for the welcome! so far unfortunately a fc test has not been done due to insurance? but the other one that just tests for inflammation in stool was the one that came back positive.blood in stools negative. she did not say they were going to do the fc test next but did say it was one to find out how much inflammation there is. I have so much to learn! dont think I mentioned how much he is dealing with fatigue now more than before. thank you guys, so good to be a part of this great group, Andrew and I are grateful!!
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hugs
first request hard copies of all blood tests, pathology reports, and doctor summary notes.
keep a binder or pdf file.
These can help later.
read them over and over.
ask questions here.
inflammation can be caused by many things not just IBD.
That is why the pathology report is so important.
Keep a diary of the his symptoms.
wiki has a good idea.
http://www.crohnsforum.com/wiki/Diary-Inclusions
keep on your phone in a notebook or spreadsheet
the stool test for parasites are very specific so that is a good thing.
Colitis
http://www.emedicinehealth.com/colitis/page2_em.htm
certain things in a pathology report will get he IBD box checked.
otherwise it is a series of things need to be found.
Have they done an MRI of the bowels or a CT scan?
Pill cam can be done during a scope- they place the camera while your child is under during a normal scope.
once you get a copy of the pathology report we can help you figure it out.
first request hard copies of all blood tests, pathology reports, and doctor summary notes.
keep a binder or pdf file.
These can help later.
read them over and over.
ask questions here.
inflammation can be caused by many things not just IBD.
That is why the pathology report is so important.
Keep a diary of the his symptoms.
wiki has a good idea.
http://www.crohnsforum.com/wiki/Diary-Inclusions
keep on your phone in a notebook or spreadsheet
the stool test for parasites are very specific so that is a good thing.
Colitis
http://www.emedicinehealth.com/colitis/page2_em.htm
certain things in a pathology report will get he IBD box checked.
otherwise it is a series of things need to be found.
Have they done an MRI of the bowels or a CT scan?
Pill cam can be done during a scope- they place the camera while your child is under during a normal scope.
once you get a copy of the pathology report we can help you figure it out.
thank you so very much for all of this info! you are very kind! they have not done an MRI or anything like this yet. I was not sure if Andrew could tolerate this but maybe they could do something like you mentioned. was happy to hear what you said about the parasite test, You gave me such great advice! now I will go look at the links you sent! I will post again when the blood work and stool samples come back. I am glad they give us a website to look at those records, not the scopes though.(have to ask for those I think) I feel so glad to know you guys can help me to figure it out, it feels very daunting. Hope your child and everyone else is doing well, God Bless you, Dawn, Andrews mom
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Little kids under four can have an mri while sedated - so....
maybe...
our place has movie goggles so the child watches the movie and is still without trying.
maybe...
our place has movie goggles so the child watches the movie and is still without trying.
DustyKat
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- 23,973
Hi dpligon and :welcome:
I am so sorry to hear of all your lad is going through. :hug:
You have already been given fab advice and I agree with all that has been said. It will be helpful to you to obtain copies of all tests and to keep a journal of his symptoms as it can help lead to a diagnosis, not to mention how hard it is to keep everything straight in our heads only!
I do think it will be imperative at some point to get imaging done of the small bowel. Although MRI is preferred over CT, due to it having no radiation, a CT may be your best option as the scanning itself is over in a couple of minutes.
Good luck the latest test results and welcome aboard!
Dusty. xxx
I am so sorry to hear of all your lad is going through. :hug:
You have already been given fab advice and I agree with all that has been said. It will be helpful to you to obtain copies of all tests and to keep a journal of his symptoms as it can help lead to a diagnosis, not to mention how hard it is to keep everything straight in our heads only!
I do think it will be imperative at some point to get imaging done of the small bowel. Although MRI is preferred over CT, due to it having no radiation, a CT may be your best option as the scanning itself is over in a couple of minutes.
Good luck the latest test results and welcome aboard!
Dusty. xxx
thank you both! things to consider when talking to the doctor. We have considered changing locations, Vanderbilt is a huge place and it takes a very long time for things to happen but maybe this is everywhere! From reading from you all, I see it can take a long time to get help. I have been reading from this forum, before I posted and cannot believe the wealth of knowledge here but most of all the compassion you all have for each other. It is nice to know that others really understand what you are feeling! Have a happy Saturday! ps, sorry bout my spelling, it is horrible!!
