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crohnsinct - good Lord, zucchini is her favorite thing ever! I had no idea...of course, right now there's not much she can eat anyway. I think you and Maya142 would crush any google reality show, lol. Now if you could just have the show set on a tropical island. With cocktails. THAT would be a...

DanceMom---have they ever been able to pin anything down with your daughter? They don't even have partial answers right now. I think they're going to slap an IBS-D label on it and call it a day. Or at least they're going to try, anyway...you're right, being patient is hard right now. I feel like...

crohnsinct---yeah, that's the first thing they asked me, whether I suspected an eating disorder...uh, no. The kid wants to eat. She just feels like death after she does. She really resisted taking a break from dance earlier in the year, but she's ready now---fortunately, it's the end of the...

It does, actually!! Thank you so much, I will bring this up at our appointment on Mon.!:)

She feels extremely nauseated about 15min after eating, and then severe stomach pain (starts out crampy and then becomes sharp) and left mid-abdominal pain and swelling. Most of the time, she has diarrhea (up to 7 times a day and more throughout the night). The most incredible stomach noises...

Thanks, Sascot---I feel like such a jerk when the doctor tells us that everything came back normal and I look disappointed. My daughter has been on the FODMAP diet for a couple of weeks...we've seen a little improvement, which is good, but there is still the abdominal pain, diarrhea, nausea, and...

my little penguin - he didn't biopsy the ulcers this time, because it was just a consult visit, so we have to make another appointment for that. We haven't found a supplemental formula for the weight loss that she can keep down---if she loses 2 more pounds, they're going to do IV...

Hi, just wanted to follow up on this thread...my daughter has now had a CT scan, capsule endoscopy, ultrasound, blood work, and fat malabsorption test. All negative. She has continued to lose weight, and looks like a stick. She has developed perianal fissures, and has constant pain and swelling...

CarolinAlaska---thanks for the info on the MRE! Believe it or not, I've heard of hypermobility syndrome, there was a family in one of our family-of-special-needs-kids support groups. I had no idea the symptoms could be so severe, though. Hope your daughter is getting all the help and support she...

Maya142---there aren't really any big hospitals here (some are downright laughable, very much like going to Walgreens for ER care), but we could do Boston for sure. Optimistic---The adult GI was very much like that, he was very confused as to why she was there. He is probably used to seeing...

Maya142---I think they would let us, I'm just not sure if we need to be referred by the GI or the GP. This is a very small GI practice, at the smallest hospital in the city. Not that small practices are all bad, but they're just not always...up on the latest research. It is Maine, after all. But...

my_little_penguin---hopefully, they'll be able to tell us more when we get the results back from the biopsies. You hear so many stories about people going in and getting negative test results over and over, and then finding out they have something. My daughter was in tears on the way home from...

We are seeing an adult GI---I wondered about that. The insurance tells us where to go, so we have no input on who we see. I'll have to ask the GP about getting that changed. The GI guy who did the scopes was very irritated about the fact that she was 17. Everyone else in outpatient surgery was...

Catherine--okay, this is the weird thing...don't you think a stool sample would be one of the first things they would test? No stool sample testing. I even asked about it,but they said nope, they weren't interested. They are treating the low D, but for some reason wanted to wait until after the...

my_little_penguin---I will ask about Bechets, the mouth ulcers are really painful. She sometimes says it's hard to breathe because the air going in hurts! Maya142---thanks for the info! I had heard about small intestine involvement, so I'm inclined to do the tests anyway. Better to rule it out...

my_little_penguin---as far as I know, they haven't ruled out anything, but I will ask about gastroparesis. That's interesting, about the food. No MRE. I think the next step they mentioned was an OB/GYN and an allergist. The GI who did the scopes suggested it might be anxiety, but she's pretty...

CrohnsKidMom---thanks for the advice, I didn't even think about keeping a food/symptom diary, that might be really helpful! She can still only eat small, bland foods at the moment, and she's drinking Ensure whenever she feels up to it (hates the flavors), but she desperately needs to put on...

(Sorry, I was going to post this in the Undiagnosed kids group, but I can't find a new thread button) Hi---just wanted to quickly introduce myself. My name is Chrys, my daughter's name is Anne (17). We are just starting down the path to a dx (of anything, really), and I'm looking for any...