Thank you MLP and WindingRS!! I actually read both of your messages to my little guy, and that helped tremendously - he is feeling much better about going tomorrow. I think this is all so scary because we don't personally know anyone that has any of the issues he has, so we definitely don't know anyone that has been through all the testing he is having. This helps a lot to know he isn't the only kid out there that is dealing with this stuff!
MLP - our school mascot is a penguin so he was like mom! maybe they go to our school
. I told him no but he still liked the name. Im sorry to hear about all of the life threatening allergies - I know as a mama that has to be so scary at first. We have many friends that have kids with life threatening allergies, and my heart always goes out to them. Thank you for painting the whole picture of what this experience will be like for him. In true fashion I do have a few more questions
- I left a message for his doctor - so he has to go 2hours beforehand because they said since he had scopes within 8 weeks of the MRE that he has to have an XRAY done to make sure they didn't leave any metal inside - normal? I knew normally it was an hour before to give them time to drink the 3 drinks so I originally planned on 1:30. It's fine - just curious.
- Also, his test is not until 2:30 so we have to get there at 12:30 pm - They were very vague in the instructions - no eating 6 hours prior to... - does this mean prior to when we have to be there (12:30) or prior to the test time (2:30). So in theory this would allow him to have a light breakfast that morning, or no? His least favorite part of the scopes is the fasting so was just curious. And I know I should always check with the doctor so I am waiting for their response, but just was curious your opinion!
- When the pathology comes back from scopes biopsies - is the pathologist the one that usually writes the diagnosis of Crohn's if they see something on biopsies? I keep reading people that get results and it says expected Crohn's, Colitis, or Iletus, etc. - with my son, it just said chronic mild inflammation and rare cells that could mean mucosal damage so I was just curious.
-Also, you, along with several other people, have suggested always getting a second opinion - since we live in MD, so fairly close to CHOP I was thinking of attempting to get a second opinion. Would this mean he would have to go through all of the tests all over again? Even with the recent pathology they didn't have an answer to the rare cells seen in his cecum just that it could be due to mucosal damage, and something is telling me to investigate - but this would mean he would need biopsies done again, I'm assuming? Also, if I could, I would like to first start by sending them his records to get their opinion without having to actually go there - is this a possibility?
- I know these are two totally different tests so it is comparing apples to oranges, BUT is the MRE just as good at detecting small intestines Crohn's as a capsule endoscopy? I see so many saying they had every test under the sun including MRE and it wasn't until the capsule endoscopy that detected Crohn's in small intestine. His doctor was saying that a lot of times patients will have mild chronic inflammation in the stomach and then show inflammation in the small intestines indicative of Crohn's, which she believes he is going to show - then why didn't she just jump to the capsule endoscopy instead of doing the MRE first?
Thank you so so so much for all of your help! I apologize for so many questions.