Was almost hopeful I'd join the Undiagnosed Club

[imwood]

Blargh. First of all, I like this GI less and less. He has the personality of a badger, that's had a stroke.
Couldn't go to our followup appt for Prometheus results bc I was in the hospital with campylobacter & the girls were at home sick as heck with it as well. So we asked for a phone discussion. The phone discussion was "I don't have your results back yet, I don't know why, I'll call you Monday." I called Monday afternoon, still not having heard about results (Prometheus 7 testing, plus Celiac profile) and they promise they have them now, and he'll call me. I finally get a 14-second voicemail. "Your results are normal, call if you have any questions."

WTF. OF COURSE I HAVE QUESTIONS. You told us two weeks ago the biopsy showed microscopic evidence of Crohns, esp in conjunction w her joint pain & mouth sores and obvious ongoing GI pain & issues. A 15-second voicemail totally contradicting that just blows my mind, you ass! So, I call. And call. And call. He never calls back. I ask his staff twice for the results to be faxed to me, and they aren't.
All week I have been confused & wondering if maybe now I should slink over to the Undiagnosed Club and start back at square one :frown:

Finally yesterday, I call back AGAIN & I'm not happy. I tell them I don't care if he has the personality of a doorknob, I am a parent, and a very confused one. I am not a doctor, and I do not know the next step. He has not told us the next step, except to call, which I have done, and he has not returned my call. Do we schedule an appointment? Do we blow off and die? I say I want the results faxed NOW.

I get the results. The CELIAC panel is normal. The CROHNS panel is NOT NORMAL. Her CIB1R is >100 and anything >78 is + for Crohns. Apparently it's a small subset of the population with Crohns that until recently flew under the radar.

I think maybe his voicemail meant the Celiac panel was normal, and he didn't mention the Crohns panel because he already assumed that I must assume she had Crohns? I don't flipping know, but he shouldn't assume anything. I'm new to this. I still don't even know if we're supposed to come back in??? His staff won't schedule without his say-so, and he isn't saying so!!!

 

[Tesscorm]

How frustrating and maddening!! We've discussed this sort of thing on the forum before; I don't understand how these doctors can not understand how worried patients and parents of patients are!! We just need reassurance that our child's illness is being treated, not slipping through the cracks and some sharing of knowledge would be nice! And, it certainly doesn't build confidence, when you get voicemails as you did!

Unfortunately, I think you just have to persevere and keep calling to follow up re an appointment. Good luck, I hope you get some more definitive answers soon! :ghug:

 

[Crohn's Mom]

Oh dear...I'm sorry you're getting such a run around from your doctor! :stinks:

I agree with everything Tess said ~ unfortunately, you probably have to keep calling :ywow: As a matter of fact, If I were you I would call and demand an appointment, in the same manner as you "asked" for the results to be faxed!

I just don't understand how doctors offices can be so nonchalant about their patients worries and concerns :shifty:

Hang in there and best of luck !

 

[archie]

I think the best thing is to go in in person and try and arrange the appointment face to face. Some receptionists just don't 'get it' and there might be a lack of communication between them and the dr as this is quite common. Secondly write everything down for when you go see him. If you can't get to see him ask them is he refusing to see you and what are his reasons (in writing). These guys are really busy but that's still no excuse for lack of commen curtosy. Try not to get mad but diplomatic you might get further, they just don't understand how frustrating it is waiting for answers which I'm sure is worse if it is about your child.

 

[DustyKat]

Oh man, this is ridiculous! Grrrrrrrrrrrrr.

I agree with Archie, go in person and sort it out there and then and tell them you aren't leaving until it IS sorted. If it isn't possible for you to do this can your GP ring and speak with the GI?

Dusty. xxx

 

[imwood]

After the previous talking-to by Dad, which got the GP and GI talking, you would think that got things going somewhere, right? Wrong. The GP wasn't even aware that the biopsy showed signs of IBD.

GI called me back on Friday & I missed his call by six minutes.. at two-something in the afternoon. I called back, and guess what - he's already gone for the day. Well, I was done. Furious. I got mad. Bawled out his staff. Told them exactly how unprofessional they were, and he was, and the entire experience had been a farce. Also, that I'm pretty much tied to them, because we live in a rural area, I'm already driving an hour each way to get to them and the next pediatric GI is an hour and a half away, so it takes me a half day off work every single time I go there as it is, and my daughter misses a half-day of school each time.. I would hate to miss even more time/money from work and her miss even more school because the one doctor in the area was unable to service their patients in a minimally acceptable manner.

To treat people like this is just reprehensible. With or without his "permission" I said I wanted the appointment that he'd already given permission to schedule rescheduled immediately. They offered the "first available" which was the end of February and I told them that was unacceptable given the circumstances. Magically, after a brief hold, an appointment became available on 15 Feb.

Yay!

 

[dannysmom]

The CIB1R was the only positive anitbody for Danny too ... and the overal Prometheus results was pattern consistent with Crohn's. Since CIB1R seems to be the newest anitbody tested ... not all doctors considered this conclusive evidence of Crohn's. I am curious what your doctor says. (I am also curious because I think Prometheus keeps changing the values of what they consider normal ... I am about to check Danny's results again and the Prometheus website ... not sure why their values change and if their algorithm changes would then mean older results could get interpretted differently ....)

 

[imwood]

I'm interested, too. I noticed in my reading, in 2006 they had a positive result as anything over 24-43, depending on the interpretation. On the range for Rosalyn's test, it was anything over 78... her reading simply said >100, so I guess it was pretty darn high. By anyone's standards, her result was a very high positive. Reminds me of the time I had a kidney infection so bad, the WBC reading on the lab report simply said TNTC (stands for Too Numerous To Count)... and from my reading, the CiBR1 happens with a tendency to develop fibrostenotic Crohns, with less diarrhea and more strictures, which falls right in line with the symptoms she's had thus far.

Another one, I think the PANCA, was just barely below positive also. Her inflammation markers were above positive values for three out of the five markers, as well. Were Danny's inflammation markers out of whack?

And for everyone, I'd like to clarify that I'm not a fire-breathing, machete-wielding helicopter parent usually. I don't like having to feel like I'm going to battle every time I call the doctor, it makes me look and feel high-conflict, type-A, all those things. But these folks are unreal. I'm a lover not a fighter. :heart: really!

 

[dannysmom]

Danny just had the IBD 7 panel (>2 years ago) ..the newer Prometheus tests did not exist. Danny's CBIR1 was 38 ... which would now be negative. (His ANCA numbers would now be positive though) I just read an article (from 2010) that said the values for the CBIR1 test only has about a 50% sensitivity and specificity (much lower than reported by Prometheus) ... perhaps this is why the reference value changed.

"The antiflagellin antibody assay, the newest assay added to the panel, had sensitivity of 50% and specificity of 53%. Repeat serological testing failed to produce consistent results for 4 of 10 patients."
http://pediatrics.aappublications.org/content/125/6/1230.short

I hope you get help soon. It certainly is frustrating when you have a sick child, and some positive results/indicators are dismissed as 'normal' ...

 

[Lustforlife]

I know this is an old thread but I thought I'd weigh in. (I was searching for cbir1 info so someone else may as well later on).

My Prometheus test showed pattern not consistent with IBD, with cbir1 being the only serological marker out of range at 83 vs reference <78. Also had VEGF out of range on inflammatory marker side. I also don't have the frequent diarrhea, had clean visual colonoscopy, and waiting on biopsy results before proceeding with pill cam.

 

[Sascot]

Wow, that must have been soo frustrating. We have had issues like that with both my kids and I hate it because I don't like confrontation at all. You were right to fight for your kid - she should be seen really urgently! At least you managed to get a slightly quicker appointment. Worth letting them know what you think when you go in for the appointment!