Where to go for a second opinion?

[kimmidwife]

We are thinking of going for a second opinion. I have read the top three GI places for pediatric are Boston, Philadelphia, and Cincinnati. I wanted to hear from other what their opinions are. We are worried they are missing something with Caitlyn. She continues to have severe nausea and pain.

 

[Clash]

Those are also the ones I have always heard were the top IBD. I'm so sad to hear she is still having trouble, I do hope you are able to find the answers and get her feeling better quickly! Sending my hugs and support your way!

 

[my little penguin]

Sorry to hear she isn't doing as well.
DS still gets nausea and pain daily but his has slowly improved over the last three months.
We went to cchmc ( cincy) twice for a second opinion but only one of those times was at the Ibd center.
They were very through with DS's record review .
Ordered as many tests at our home location as needed so they would be reviewed before we went out for our appt.
We met with multiple specialist while we were there.

So from that standpoint it was very good.
They could not explain DS's nausea and pain either at all despite that fact he was even vomiting on the trip out there.

So for us we gained a little by going
Confirmed crohn's and the meds needed
But never got the "moment " of this is what is causing it.

We were thinking of looking at Boston next this last time
But DS has slowly ( very slowly ) been improving .

I think you get a better feel by calling all three and talking to the intake coordinators and nurses.
Ask about outside the box kids ( as in how many do they handle )


I wish there was an easy answer.

We did figure out for DS liquid was the issue .
Too much or drinking then eating was a guarrentee nausea spell

 

[DanceMom]

We just came back from CHOA at Egleston and it was a great experience. Everyone there went above and beyond to make our visit a good one and my daughter said she felt like a celebrity. The doctors called me personally several times before our visit and also during the visit to keep things running smoothly. We will definitely consider continuing care there.

 

[Brian'sMom]

I've heard Dr. Baldasanno is good at CHOPS. He had crohns as a child too. He has many many papers published. Google him. We saw DR Stephens at Mayo. He worked under Baldasanno. (A do-able drive for us since we wanted someone to stay on ours son's case)

 

[kimmidwife]

I am sooooo confused! the more I read the more I am confused about where to take her.
I need to find a place that deals with both motility and IBD. In case she really does have a motility issue which I am still not 100% convinced of!

 

[Sascot]

Sorry to hear she is having problems again. Hope where ever you decide on, they can give you some answers and more importantly some solutions!

 

[kh216]

Here is the link for the best children's hospitals according to U.S. News and World Report:http://health.usnews.com/best-hospitals/pediatric-rankings/gastroenterology-and-gi-surgery?page=3

I live near Children's Hospital of Philadelphia and know that it is an excellent hospital. However, if you want to find a place a little closer to home, Holtz Children's Hospital at UM is in Miami and it's ranked #22.

 

[Brian'sMom]

I am sooooo confused! the more I read the more I am confused about where to take her.
I need to find a place that deals with both motility and IBD. In case she really does have a motility issue which I am still not 100% convinced of!

I should've mentioned that we went to the Mayo in Minnesota. I think there is one in Florida too. It can be confusing and overwhelming. The way I picked was I called and talked to the staff. I was looking for someone who deals with EN and my son's body is stubborn to medicine. One that is good with teenagers. And someone that would take the lead...not just give a 2nd opinion and be done. I found a lot of this out before we went from phone calls. Then its just a pray about it and go kinda thing. And remember, there is always a third opinion option. I still am keeping my eyes and ears open if we need to go elsewhere too.

 

[DanceMom]

CHOA is #12 on the list kh216 provided. We were referred there by our local GI so I'm not sure if our experience would have been the same had we chosen to go on our own. Our GI was in close contact with the CHOA team prior to and during our visit there.

 

[kimmidwife]

Still biting my nails over this!!!!!
Making some phone calls this morning. Will keep everyone posted. Hoping some others will pipe in this morning about their experiences at CHOP, Boston, Texas, or Cincinnati