Advice to choose/experience with out of state top pediatric IBD center consult for my son
Mon, February 23, 2015 12:25 AM
My 13 year old son was diagnosed with Crohns in his colon and terminal ileium at the beginning of the school year and has been in and out of the hospital since. He has been slow to respond to the 5ASA's, Remicade, and Imuran we have used and quickly relapses when we try to wean him from Prednisone. We thought it would be wise to take him to a top pediatric IBD center in another state for another opinion. Ideally they would discuss biologics, immunosuppressants, complementary meds or treatments, and nutrition. We want a place that conducts research and is well read on the latest research in the field.
Would love to hear experiences from places other parents have taken their kids that have given them good insights into their plan - which places were great experiences with great doctors? We live in Cleveland so ideally we will start with a pediatric IBD Center in the midwest or East Coast. What process did you use to decide to take your child or teen there?
Thanks so much ! Lisa
Joined Feb 22, 2015
Tue, April 14, 2015 12:10 PM
Our son has Crohn's disease and is 5 years old. It has been important for us to seek out second, third etc. opinions. However, we are on the west coast. Our son's GI has been cooperative and helpful in referring us to other doctors so you may want to start w/ your son's current GI for a referral. This way, they can send his records etc. to the other GI docs for review for your appointment. I believe that the children's hospital in Philadelphia and Boston are both top notch pediatric GI hospitals. Good luck!
jillcgJoined Mar 22, 2015
Tue, March 03, 2015 9:35 AM
Reply posted for jeff1990mom.
So sorry your son is having a hard time. I hope he feels better soon. If it is of any help, in my researching, I have heard that a hospital in Cleveland and one in MN are tops for adult IBD. There doesn't seem to be any "best" list, so have been networking and reaching out to different people, reading, etc.
Joined Feb 22, 2015
Tue, March 03, 2015 9:32 AM
Reply posted for lizzies mom.
Thank you, lizzies mom, that is very reassuring. Hope your daughter is doing well now.
Best, Lisa
Joined Feb 22, 2015
Sat, February 28, 2015 3:45 PM
Reply posted for lisa devotedmom.
Our daughter was sick from infancy and dx @ 4 w/CD. I would strongly consider Philly - top notch, cutting edge technology / education, etc.
Joined Sep 9, 2009
Fri, February 27, 2015 4:50 PM
Reply posted for lisa devotedmom.
Lisa, thank you for your input. Unfortunately, my son is an adult. One place for pediatric care is a hospital in Morristown NJ. We saw a pediatric doc there for a number of years because of insurance. I also have heard about a hospital in Baltimore about being good. But what I'm doing right now is just researching therapies. I'm finding that it's all pretty much text book. Everyone does the same thing, and it's just a matter of experience. In doing some research I found a report, U.S.World report: gastroenterologist and GI surgery. They list the best centers in the US. Follow your gut. But I think you have the best of the best already. Perhaps look for a clinical trial. Today is not a good day for me. We just found out that the fistula is still there and my son is looking at two more major surgeries. Good luck.
Joined Feb 25, 2015
Fri, February 27, 2015 4:32 PM
Reply posted for jeff1990mom.
We have been to a hospital in Cleveland for a second opinion. Our son has an unusually stubborn case with some unique issues, and seems like it is not responding to Remicade. So we have been researching what the best pediatric IBD centers are. The hospital in Cleveland is great, but there are several other top places in the country including one in Philadelphia and one in Boston.
Joined Feb 22, 2015
Wed, February 25, 2015 5:03 PM
Reply posted for lisa devotedmom.
A hospial in Cleveland is the best in the world! Why would you look any further? I live in NJ and am considering taking my son there. The care in NJ has been wonderful, but we have a weird issue going on that my doctors are not familiar with in a hands on fashion. Only textbook. Stay home, it's much easier and you have the best in the world in your back yard.
Joined Feb 25, 2015
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