New... Daugther in diagnostic process

[mbkaiser01]

I'm new to the group and posted our background in a different thread. Essentially my hubby and daughter are both going through the diagnostic process for IBD. They got to this point via very different paths and our pediatrician says it would be very crazy for them both getting diagnosed at the same time but nonetheless.. I'm just wondering how other got diagnosed, and specifically the role the Prometheus Sgi test played. I understand the Sgi test is an advanced form of the Prometheus 7 test, but then again I'm new to all this. Anyways, specifically as it relates to my daughter Riki, she is 13. She's a fraternal twin, and her sister is healthy. There's a huge size difference between the two. Her twin has gone through puberty and is a nicely developed and averaged size 13 year old. Riki on the other hand is very small. Their size difference started about five years ago. Riki is about 85lbs, and under five foot tall.

Fast forward, Riki had two major surgeries over the past five months and spent time in the hospital both times. She started having major diarrhea and abdominal pain about a week after her first surgery. We attributed it to the pain meds, etc. It lasted for over a month. She had he second surgery a month later and the diarrhea and abdominal pain returned. We tried gluten free, dairy free, etc. to no avail. The pediatrician ordered cultures which were all negative. After the symptoms continued, she also ordered the Prometheus panel. The panel came back positive for Crohn's. Her serological, genetic and inflammatory markers were all positive. She referred us to a GI doctor. The GI doctor said she has no faith in the blood test. She did an upper and lower scope and said she didn't have Crohn's. Her nurse called last night and said the biopsies came back clear only showing reflux. She said to start on reflux meds and return in three months. Ironically, she's never had any symptoms of reflux.

She's still suffering from diarrhea and abdominal pain. I'm definitely not trying to put a diagnosis on her but, especially with everything going on with my hubby (scope showed UC/Crohn's, hospitalzied with pancolitis, CT showed IBD, no prometheus test done) we're concerned. Are we wrong to think that her small stature, delayed growth, chronic diarrhea, abdominal pain and all three portions of the IBD panel coming back positive are something to be concerned about.. Indicentally, the pediatrician seemed to be pretty concerned to though we haven't gone back yet after the colonoscopy since it was just last week.

 

[my little penguin]

Did they do imaging MRE or pill cam?
Small intestine is very long and it can hide in there

 

[Maya142]

I agree - they should definitely be checking her small bowel - it's usually done with an MRE or pillcam. Considering she has delayed growth, I would definitely push for them to check her small bowel. Reflux does not cause diarrhea - do they have an explanation for that, if they think it's not IBD?

It also might be worth thinking about a second opinion. I don't know where you are located, but the best pediatric GI departments are at Boston Children's, the Children's Hospital of Philadelphia and Cincinnati Children's.

Hang in there!

 

[pdx]

I also agree about getting an MRE or pillcam. Has your daughter done a fecal calprotectin test? That can also give some information about inflammation in the small intestine.

Good luck--hope you can figure out what's going on soon.

 

[mbkaiser01]

Thanks. We are about an hour east of Cleveland. The specialist was at Rainbow which typically has been a great hospital for us. Unfortunately we haven't received any explanation of her continuing symptoms or the positive blood tests. No MRE or pill cam was discussed. The GI nurse indicated she was going to cancel our follow-up since the biopsy was clear and just follow up with the nurse practitioner in three months for the reflux. We pushed back and said that we did want to keep the follow-up but I think we re going to get another opinion.

 

[Jabee]

My crohn's has always been located in the small bowel. Definitely ask for an MRE or pill cam. Easier said than done, of course. Most doctors like to suggest the tests, not the other way around! I've found it easier to advocate on behalf of my children than myself, but it's still tough. Bottom line, your daughter is the "client" and you are paying the doctor's bills (through your insurance). I've never understood why GIs like to wait and see while the patient is left clearly suffering.

 

[my little penguin]

Definitely second opinion
They are very good at a lot of things but not ranked very high for pediatric GI
http://health.usnews.com/best-hospitals/pediatric-rankings/gastroenterology-and-gi-surgery

#19

 

[DanceMom]

My daughter had the Prometheus test 6 or 7 years ago, which also indicated Crohn's. She does not have Crohn's, but does have a far more rare GI condition that shares some Crohn's like traits. Diagnosis took about 11 years. My advice is to get another opinion and seek further testing if you believe your daughter is unwell. Good luck!

 

[CrohnsKidMom]

Sorry to hear your family is going through such a rough time. I agree with stool testing and MRE. When my son was diagnosed, they saw active disease only in his small intestine, where no scope can access. At the time, they did an indium scan (nuclear medicine) which revealed the location of the disease, although MRE is far more common now. I agree a second opinion is also a good idea.

 

[sabrina123]

My dd - a little youngers than yours - had growth stop / daily diarrhea & frequent strong abdominal pain. She actually did have reflux occasionally, but didn't know to call it that. Blood labs showed nothing.

She had small bowel show up only with pill cam and not MRE. I think many doctors have you do the MRE first before you can do the pill cam to make sure no strictures. I've heard anecdotally - but absolutely no way to verify this - that the MRE isn't always done really well to pick up things or maybe its simply not as accurate as the pill cam.

good luck.