Mayo or Cleveland Clinic

[AquaMama]

My almost 14 year old son was diagnosed with Crohns Disease 9 months ago. In September he underwent surgery for complex fistula and 5 weeks later he was back in surgery to drain the fistula again. He currently has seton drains and continues to take 6 MP, Flagyl and Budesonide. While his lab work has been normal since December and he feels good, he is VERY small for his age. He weighs about 77 lbs and is not even 5 feet tall. His GI and surgeon would like us to try Remicade but we are reluctant because I read too much on the internet and Remicade scares me. I don't need a second opinion for the Crohns diagnosis but want to make sure we are doing the best we can with treatment options. His colorectal surgeon recommended the Cleveland Clinic, friends and family have suggested Mayo, his GI doctor has recommended Boston. Has anyone had experiences, good or bad, with either Mayo or Cleveland?

 

[Jmrogers4]

I don't have experience with any of them but our boys sound very similar. Jack is almost 14 (in July) and just hit 5 foot tall and was 77 pounds. We seemed to have the CD under control at least according to last scopes 2 weeks ago and blood test. We suspect there is ongoing activity in small intestine as we have not seen weight gain/growth that was expected.
Jack is currently on supplemental EN which seems to be making a difference he has gained 7 lbs in the last 2 weeks (more than he has gained in the last 3 years). It may be something to look into regardless of the maintenance med you choose.
Remicade had been a wonder drug for many on here and have seen vast improvement in child and they too had the same reservations you have. The most important thing is to get inflammation under control and once the disease is under control then the growth and weight gain happen. The possible side effects are very small percentage. Mylittlepenguin has posted many times what the exact odds are in a very easy to understand way. I'm tagging her so that hopefully she will respond. Her son is on remi and is doing very well on it.
Hope you get your ds feeling well soon and welcome to the forum

 

[CarolinAlaska]

Sorry I don't know about any of the hospitals you mentioned. I too thought of EEN for your son, or at least supplemental...

 

[CLCH87]

I've been to Mayo in Jacksonville. It was an amazing experience being able to see doctors from all specialties in one location but it takes a long time to get an appointment along with any follow up appointments are hard to keep unless the location is very close to you. I also have a friend who works at Cleveland Clinic in Florida and from what she says between the two I would choose Mayo again and again.

 

[Crohn's Mom]

We have been going to the Mayo clinic for 2 years now and we're pretty happy with them

on another note...I had no idea we had a Cleveland Clinic in Florida ! wow ~ LOL

 

[my little penguin]

The number one colorectal center for pediatrics in the us is cchmc .
Not sure how the Cleveland clinic( rainbows babies and children's ) ranks.
I think their ped Ibd program may be in the 10 - but i thought it was low.
The Cleveland clinic for adults with Ibd is highly rated.
So maybe that's the confusion .

My son takes remicade and is doing very well.
We did get a second opinion at Cincy ( cchmc) but only because DS does not have a typical presentation with crohn's .
I highly recommend them.
But if your traveling far anyway - Boston children's
Top in the country for ped Ibd would be Boston children's
Then CHOP ( philly )then cchmc ( Cincy ).
Good luck

 

[my little penguin]

http://health.usnews.com/best-hospitals/pediatric-rankings/gastroenterology

List

 

[CLCH87]

We have been going to the Mayo clinic for 2 years now and we're pretty happy with them

on another note...I had no idea we had a Cleveland Clinic in Florida ! wow ~ LOL

The Cleveland Clinic is in Weston near Ft. Lauderdale. I was happy with Mayo too it was just a long drive for us.

 

[Switalski]

I had my surgery last April at Mayo in Jacksonville. I highly recommend it, but I don't think they treat children there. I could be wrong. Best to check that first before spending a lot of time investigating a hospital just to find out it's adults only. Good luck.

 

[Crohn's Mom]

You're right swit - they don't treat children there.
Although, our GI did say he has treated a child as young as 12 with special circumstances.
And they also said they will usually treat from 16 up if needed even tho they are an "adult" facility