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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Son still undiagnosed ... and so frustrated


10-18-2011, 08:01 AM   #1
dannysmom
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son still undiagnosed ... and so frustrated

Hi everyone. I feel like venting and this subforum is the best place for me since Danny is still undiagnosed!

Everything that our GI tested in the last month came back 'basically normal'. ... and he ordered everything I asked for:

Stool calprotectin ... normal
B12 ... improved since his shot ... now in the 600's
Iron ... normal
total tryptase .. normal (sometimes helpful for mastocytosis)
complete amino acid profile ... normal
CBC ... normal
ESR & CRP ... normal
CMP ... slightly off on some (Chloride, Calcium ... but would be normal range from other labs)

And MR Enterography ... 'basically normal'
- the GI told me that he had 2 radiologists review it and they thought that a couple of his loops were think, but it was not enough to hang a diagnosis on.
- I received the written report and it says the loops show no thickening. The only abnormality is multiple lymph nodes (subcentimeter) in the lower right quadrant.
(But after some research, I read that mesenteric adenitis is a more common finding in pediatric patients ... even asymptomatic ones. If Danny was an adult, this finding may mean more .... but it could mean a virus, bacteria, or chronic inflammatory disease like Crohn's or Lupus.)

The GI recommended following up with rheumatology given an increase in his joint pain. (Danny's ANA was positive, but just 1:40, when he first became ill, but he did have 2 normal ANAs after that.)

Danny had a cold last week as was coughing up bloody phlegm again, but thankfully that only lasted for a few days. We have a pulmonologist appointment in Nov.

Hi GI did not want to do a repeat colonoscopy yet and we are to follow up with him in about 4 months. I am debating going to a different hospital for a colonoscopy and possibly endocrine testing. (still not sure) Danny last colonoscopy was almost 2 years ago and it did show eosinophilic inflammation in several parts of his digestive tract and active inflammation in his cecum. They could not access his terminal ileum for biopsy. (pillcam last year looked normal)

Danny still has constant fatigue, headache, ab pain and D 3-5 times daily/nightly.

Thanks for listening if you made it this far!
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
10-18-2011, 08:33 AM   #2
Tesscorm
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Jeanne,

How incredibly frustrating! Its hard to believe that so many tests can all come out fine given Danny's symptoms.

Somehow, find a bit more patience and keep turning those stones! When I was sick as a child, I went through countless, countless doctors, specialists and tests. When I was finally diagnosed, the children's hospital in Toronto had only had 9 cases in its records - so finding the diagnosis took some doing! But, a diagnosis was eventually made! It may just take one doctor to see something that no one else has... even though I had leading children's specialists, heads of the departments, looking after me, it was actually a young Swedish or Swiss doctor on an exchange program who diagnosed me (or, at least, began looking in the right direction).

Good luck!!! I hope something shows up soon!!!
10-18-2011, 11:46 AM   #3
Crohn's Mom
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Awe Jeanne, I'm so sorry you still don't have any answers for your Danny

Have you kept the same GI doctor this whole time? Maybe it is time to move on, even if only for a second opinion ??

I sure hope you can get some answers soon! I know how tough this is as I've been down this road with Gab and now with my boys as well.
Hang in there,
big hugs,
~T~
10-18-2011, 12:48 PM   #4
DustyKat
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Hey Jeanne,

I'm so sorry to hear that you still have no answers for your boy.

Although Sarah never had a colonoscopy her blood and other tests, X-Rays and scans always returned positive results too. I don't think a second opinion ever hurts and two years is certainly plenty of time between scopes for changes to have taken place.

Good luck hun and I hope you can get some solid answers soon. I well remember how awful it is to see your child suffer and no one able to give you any answers.

Dusty.
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10-18-2011, 04:21 PM   #5
dannysmom
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We've been to 4 GIs:

#1 did not listen and just kept recommending fiber
#2 is the one we still see; he is so compassionate and just thinks Danny has something unique that is beyond current medicine and hopes it just goes away. And as long as he is growing, gaining weight, keeping up with home instruction and has tolerable pain levels he is not ready for any more invasive testing/treatment. He does not think it is just IBS and says he is alwyas thinking about Danny.
#3 Was a Crohn's expert and was not convinced Danny had Crohn's. He seemed to support a more agressive diagnostic plan but also gave us the impression that if everything looks normal, he may call it IBS or think he just needs therapy. GI #2 gave us pillcam at #3's recommendation. I do think #3 would repeat colonoscpoy if requested. #3 is a bit grumpy.
#4 was at a distant hospital when we were referred for Cystic Fibrosis testing. They gave us a list of things to test/try which #2 did except for the repeat colonoscopy. They knew of #3 and thought we should repeat the colonoscopy with him. #4 thought is was most likely IBS and if we lived closer they have this whole program around IBS patients which mostly focuses on CBT

So I am thinking about going to #3 for the colonoscopy ...
10-18-2011, 05:18 PM   #6
DustyKat
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Keep doing what you are doing Mum, fighting on until you get answers. I know the road is hard and has many twists, turns and heartbreaks but just know we are with you every step of the way.

You're doing fab job!

Much love,
Dusty. xxxxxxxx
10-18-2011, 06:49 PM   #7
Tesscorm
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Jeanne,

I just found a site that may be of interest to you... a blog detailing the struggles of trying to get a diagnosis for a little girl. Also, on the 'Links' page, they list links to a couple of organizations that assist people with rare diseases.

http://www.mysterydiagnosiskids.org/Home_Page.html
10-18-2011, 08:29 PM   #8
dannysmom
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Thanks. Love you guys!
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