Preparing for possible IBD diagnosis. . .

[buchanaj]

As with most things out of my control, I feel better if I can research the heck out of things and be prepared for various outcomes. Based on DD's symptoms, I will be shocked if she does not have some form of IBD . . . . thrilled but shocked.

Anyway, I'm already looking into some of the pediatric IBD programs across the country. Having never been down this road before, I'm not sure how it works when you visit one of these clinics from out of town. Do they set you up with back-to-back appointments with the various specialists? Anyone have any experience with this?

 

[CarolinAlaska]

Our GI specialist in Alaska had us come packed for a three day span including initial consult, MRE, clean out, and on the third day, scopes. We got a phone call when the biopsies came back, and 9 days after the scopes came back we returned for video endoscopy (aka pill cam). I don't know how other places work. In AK they were used to having patients from remote locations.

 

[Mehita]

Tagging Farmwife... she brought her daughter to Mayo in Mn for a few days.

 

[Farmwife]

Yes we went to Mayo. They are a well oiled machine there. We went for 5 days and had at least 13 doctor visits and 4 test ( labs, CTA scan...). You have one head doc that organizes every appointment.
The whole town is geared for the hospital and it was a good experience but..........
We didn't just go for ibd, Grace has/ had a lot of issues and we were trying to figure out why.

Cincinnati has the best ibd center in the USA.

 

[my little penguin]

Actually top three Pediatric Gi centers in the U.S.
Children's of Philadelphia
Children's of Pittsburgh
Boston children's


Honestly unless your child has an unusual case you don't really need to go to a top IBd center .
Secondly thinking your kid has one particular disease without a dx is not a good thing
I was convince DS had EoE prior to his crohns dx
The forum I was on was convinced
His allergist was convinced
His Gi wasn't convinced but knew something was wrong and kept digging till he found it .
The point is just because something walks like a duck you know doesn't mean it's a duck.
There are a lot and I mean a lot of Gi issues that overlap in pediatrics
The tests and objective symptoms will eventually lead to the right dx
It just takes time and can't be rushed

 

[buchanaj]

I am NOT patient at all . . . . . I need to go get a medical degree so I can be our own family doctor as I hate waiting around to get told I need to wait around even more.

Thanks for all your help. When I feel out of control, I tend to drown myself in education . . . which can be both good and bad.

 

[buchanaj]

BTW, what is EoE?

 

[Farmwife]

EOE means Eosinophilic Esophagitis
It's part of the Eosinophilic Diseases called EGID'S.

 

[pdx]

I am NOT patient at all . . . . . I need to go get a medical degree so I can be our own family doctor as I hate waiting around to get told I need to wait around even more.

Thanks for all your help. When I feel out of control, I tend to drown myself in education . . . which can be both good and bad.

I totally understand this. My husband actually is a physician, but it never seems to help with the waiting around part. In fact, when we have to wait a few weeks or months for a referral, he always says things like "That's actually pretty fast for a derm referral." And since he's an ER doctor, his knowledge of IBD-specific stuff was minimal before our daughter was diagnosed, so she didn't get diagnosed extra early. We do have access to all of my daughter's test results from the physician side of the system, though, which is a nice benefit.

 

[DanceMom]

We've been to CHOA Egleston at our GI's request. It wasn't too far away and they do see a lot of out-of-the-box IBD kids there. But like MLP suggested, we only went because my daughter is extremely atypical and her IBD diagnosis was in question. Turns out she doesn't have IBD at all so our visit was worthwhile.