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!
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!