Search results

Also late here, but also would say to stay where you are since they will just take over, stay on same page, and is already established. Besides, who has the time to move when he's so far away?

My daughter had normal labs for years, literally. They finally took her serious when she was 12 without a bit of puberty, severely underweight and in constant pain. Before that it was IBS, IBS, IBS. The only lab that ever confirmed any abnormality was her fecal calprotectin. Other labs would...

Yes, she had immune testing with an allergist. It seemed to be fine.

Just to clarify, she is not doing enteral nutrition exclusively. She can eat. It isn't being used as a treatment for crohn's. It is just feeding her because she can't eat enough to sustain her weight.

Yes! Please tell me who!

Is Dr Saps at Nationwide Children's? Is Nationwide Children's in Columbus? Her GI doesn't seem to want to order the test, but wants to refer her to someone who knows more about kids with EDS. She has had a lot of heartburn with her NG tube. Otherwise she seems to mostly tolerate it. The...

I don't know. She mentioned re-evaluating in 3 months.

Here's an update on Jae, 18 years old. I think this particular past thread is the most appropriate because her health is so frustrating! This past spring she was diagnosed officially with EDS. She also so a pelvic pain specialist who sent her to pelvic physical therapy. That was wonderful...

Let us know what your GI says about a G-tube. What happened? I thought she got the hang of inserting it? My daughter is inserting hers nightly (about 10 days on her own now). It was a hurdle to get her to do it, but once she started doing it, she hasn't had a problem. Would it help if we...

Those are normal things in our house, so I wouldn't be concerned, but if they are new for Grace, I could see where it would be concerning to you. It may be that she was eating something she didn't agree with (in our house it is typically a meat or gluten). I've also heard of that happening...

I am wondering if anyone has some good instructions for cleaning Jae's NG tube? She takes it out most mornings and replaces it each evening. She has had it going for 2 weeks now and it is started to get stinky in spite of washing it in warm soapy water and flushing it with clean water. Anyone?

J just had to go off 6MP after years of being on them due to immunosuppression, so I would say a resounding yes.

She does get some nausea, but not daily. We are still waiting to hear about when or whether she will be sent to a motility specialist. I'll keep Maalox as a last resort. I don't want to risk making things worse or making it look like she has gastroparesis if she doesn't really. Maybe it had...

GI doctor says to try Prilosec OTC 20 mg 1 hour before bedtime. That will be our next step. I am of mixed mind about the Maalox because I found the following at...

Thanks for the info. It may just be the formula not being tolerated, or just the tube through her esophagus, but she was miserable with reflux/heartburn last night. I never really considered gastroparesis until recently because she usually tends towards diarrhea, and I thought that seemed to...

She was treated for strep many times in her first year of crohn's as she had recurrent strep after her diagnosis. It was usually caught early and treated. Not really looking that way lately.

We did get another look by another place a year ago, but they did the same tests and the same approach. I'm hoping the motility specialist will have some other tricks up his sleeve.

MRE showed increased enhancement in sigmoid colon but nothing else. Yes original pill cam showed ulcers throughout, but two others have been normal in past 2 years. Yes, waiting to flare, but pred... I don't get it. No gastric emptying test yet. Honestly, they haven't checked for anything...

She was just in the hospital for 5 days. MRE was not bad. Labs were good. They decided to take her off 6 MP for a 3 month trial to see what happens as it was suppressing her wbc count too much. They still doubt her original crohns diagnosis and are thinking that it is EDS related possibly...

Yes 150 mg twice daily. I will talk of ppi with GI today.