US News and World Report: Best GI Specialists

[Momto2girls]

Did anyone else see this came out today?

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

CHOP is first -- has anyone been lucky enough to go there? What did you think? One of my best friends is in Philly and her nephew has Crohn's and she said whenever we're ready to come up there she can get us in. I hope it doesn't come to that but GEE WHIZ I sure wish WE had the best doctors here!!

Ours is ranked #30. I know that's still considered decent, but it is a far cray from #1! I want #1!! I cannot stand our practice. Ugh.

 

[izzi'smom]

There was a similar study last year...although Tx beat out Cinci this time!
We had the option of CHOP or Boston for our second opinion-our doc trained at CHOP and wanted us to go there but we like Boston as a destination better, and the rankings are close. Thanks for posting!!
I will say, if you can manage to go to one of these places for a second opinion, BOTH of our Boston docs have been super accessible/willing to answer any/all questions despite the fact that they aren't our primary docs. One has moved literally across the country and still responds to my emails

 

[Momto2girls]

Issi'smom -- your daughter is darling!!! What a cuuutie! I am so bummed it is so far away -- but of course we could stay with our friends! Flights are just crazy expensive! And who knows what it would cost to go out of network like that? I know it isn't about money -- we'd do anything for Gracie, but so far they are acting like it is nothing!?!?! Or, at least very little?

It kinda gets me b/c our children's hospital is out there bragging about this -- on FB, etc. And I know that there are patients like me who feel completely underserved. Oh well! Maybe the doctor switch will make all the difference in the world?

 

[crohnsinct]

Thanks for the link. I haven't checked yet but keep in mind that even if yours isn't on the tippy top what matters is where your doc trained etc. I recently asked around about our doc thinking because we are so close to Boston maybe we should try to go there and the "expert" I asked said, "why would you go to Boston when you have Boston there...seems as though our guy trained and worked at Boston for years and came here to start up his own shop...so yes look at the rankings but look at credentials also.

I get so sad when I hear that people aren't happy with their docs...ergh! Wish they all listened and cared as much as the good ones. You shouldn't have to travel far for decent care!!!!!

Now going to check to see how far down the list we are

 

[crohnsinct]

...our hospital didn't even make the list:yfaint:...and I met a family at infusion once who said they travel from North Carolina to see our doc...go figure. I stll love our doc...even though they didn't call me today with results as promised:voodoo:

 

[Momto2girls]

Ooooooh...what results are waiting for?

 

[crohnsinct]

Regular blood draw at infusion. Inflammation and anemia were up 6 weeks ago and we tried EN so anxious to see if it is working. Guess no news is good news.

 

[Momto2girls]

Oh yes, maybe it is (no news is good news)? That would be great!

I am not even "excited" for this appt. I used to think, oh, this will be the answer to our prayers! But now I am convinced they are just going to say "I don't know." and send us on our way...

 

[crohnsinct]

I will never understand how docs can look at these little kids suffering and just shrug them off.

Here's hoping they stand up and take notice and if they don't stand up and walk out and go get your little darling a new doc...perhaps higher up the list (oooh maybe that was a little mean)

 

[mstout928]

Thanks for sharing this link. We had a follow-up with our doc last week to go over recent scopes, biopsy, and lab results. I left the office unhappy with their recommended treatment plan.....again. My daughter has been asymptomatic for 3 months with no meds. Everything was normal, except for a few biopsies showing very minimal inflammation. However, the doctor wants my daughter to take Cipro, Flagyl, Apriso, Nexium, Iron, and a mega dose of Vitamin D. Oh, and they want to schedule a pill cam immediately. She has no signs of infection (outwardly or labs), no anemia or vitamin deficiencies (lab), and no signs of reflux or stomach inflammation (biopsies).
We really need to look for a new doc and this list shows several options that are within a few hours. Does anyone use an Ohio doctor that will at least consider a less aggressive treatment plan?

 

[Farmwife]

Sorry to hear about your dilemma. Have you tried EN yet. That might be a good course to take if you want to take a more natural coarse.
However, just a kind word of caution. Some of these lovely parents on this forum can tell you the dangers and problems of not treating or under treating Crohn's. You can have a child that looks, acts and just over all just seems well. Their insides are a different stories. They could have major problems and we might not even know it. That's why going to a doctor that knows what he's doing help a lot. I hope you get some more answers and your DD stays well.

Farmwife

 

[jmckinley]

We really need to look for a new doc and this list shows several options that are within a few hours. Does anyone use an Ohio doctor that will at least consider a less aggressive treatment plan?

Our first Dr moved to Childrens in Cincinnati. Dr. Shehzad Saeed. We still communicate via emails and he is still encouraging us from a distance!

 

[my little penguin]

One thing to think about - you need to look at each med separately.
Together it looks like a lot - bit in terms of crohn's the main ones are not that aggressive.
Nexium- for the stomach - -may or may not be related to crohn's
Vit D/Iron- if the kiddos levels are low this is needed.
CIpro/Flagyl- are usually short term- get things under control (the inflammation they saw) and then stop.

So that leaves the APRISO Which is a ASA I believe- The lowest (smallest amount of side effects) on the list of IBD meds any kiddo take most GI's start here after a round of pred or abx (such as flagyl/cipro)

If your doc saw inflammation on the scope even if your kiddo is not having symptoms then damage is being done- period.
If you leave damage go long enough then eventually you could have a kiddo with an obstruction/fistula/abcess loss of gut. These things are well documented in crohn's and more so in kiddos with crohn's since the early the age of dx the more aggressive the disease tends to be.

I would still recommend a 2nd opinion with a new GI since you are not comfortable with yours.
Aggressive treatment of IBD is top down(i.e. biologics first - remicade/humira)
YOur doc is doing step up- first step is ASA in the US.
Sometimes ASA plus EN instead of pred or abx.

We started with Pentasa (ASA) + prevacid (DS has Stomach involvement)
THen added EN (no other foods for 9 weeks) + 6-MP
When that wasn't enough added:
pred 5 weeks
Then added allopurinol to bump up the 6-mp
Then added asacol
2nd scope showed despite being what you would consider aggressive the Crohns had gotten much worse. DS only had mild microscopic inflammation on the first scope. He most recent blood work was also normal.
We are in the process of now moving up to methotrexate or remicade.
Leaning towards remicade.
I place 7 months ago I did not think I would ever be- We were only going to give DS EN- Pentasa was considered harsh in our book.
Now I would love to get back to just pentasa.
I am not trying to judge since every kiddo is different and only your doc knows your kiddo best but trying to give you a little bit of perspective of how aggressive your DOc's plan really is.
YOur doc is starting at the bottom of the pyramid.
Most docs will start there to try and keep this evil disease from running rampant. Without treatment things can and will get ugly fast and the damage (Scar tissue) can not be reversed only removed.

I would second Cinci Children's - we went there for our second opinion and they were very good.:hug:


Check out CCFA website for treatment plans

http://www.ccfa.org/info/treatment/?LMI=5.1

 

[crohnsinct]

So true MLP!

Our doc is top down...started with Remicade. I wished he was bottom up but he says it is imperative to get the inflammation under control (and she was severe) as quickly as possible in kids and that in so doing they have great success at avoiding surgery down the road.

I remember crying when the doc said Remicade but I see how much it has helped O and when I see her tanking a week before infusion I can't get her in that chair fast enough...it is amazing how when you see your child better the scary drugs become your new best friend.

I am so sorry your son isn't responding to any of the treatments better.:voodoo: I really hope the next step is the one that works for him!

mstout: it is so hard when they look, feel and act fine isn't it. Hopefully the pill cam will give you a clearer picture of things and you and doc can come up with a plan that you are both comfortable with. It is so important to be comfortable with a doc and if this one isn't the one then definitely go find someone you are comfortable with. There are many out there and you are trusting them with the the thing most precious to you so you HAVE to be comfortable with them. It could be just a matter of communication. Perhaps you would find the same treatment explained a little differently perfectly acceptable and you just have to find the right fit. Good Luck!

 

[jmckinley]

Just to add to what mylittlepenguin says, he probably wants to do the nexium to reduce stomach acid. Our Dr did that and said that acid flowing into the small intestine will cause ulcers to develop in the inflamed areas. The vitamins are probably important for healing and our kids don't absorb very well when there is inflammation.

It is so hard to want to do treatment when they are asymptomatic. I resist treatments too. I am sure my Dr always feels like a salesman with me. But I always remind myself that keeping any inflammation under control is important and will hopefully help us avoid surgery down the road. Every flare causes tissue damage.

That being said, a second opinion is always good! Don't want to do anything that you don't feel is in your child's best interest.