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Best of the best?

As I have a newly diagnosed 11 year old son with Crohn's, I want to know who the frontiers are in research and treatment. I live in Green Bay, Wisconsin, so statewide, nationwide, does anyone know how to find this information? With 75 pages of Research and News it's a lot to read through and is overwhelming, but my son has a lot of issues currently and I want to make sure he has the best care.
 

Scipio

Well-known member
Location
San Diego
Most medical schools have a solid IBD clinic or department - Medical College of Wisconsin in Milwaukee for example, although their big IBD doc, Dr. Yarur recently moved to Cedars Sinai in Los Angeles. But the staff still there are perfectly fine.

If you really want a big name IBD doc, how far are you willing to travel? Chicago has several prominent IBD docs: Dr. David Rubin at Univ. of Chicago and Dr. Steven Hannauer at Northwestern. And there is also Dr. Loftus at the Mayo Clinic in Rochester, MN.

One thing about these big name docs is that, beyond perhaps an initial visit, most of your care there will actually be provided by the more junior docs on the staff. The famous docs are often very busy with research and flying off to speak at medical conferences.
 

my little penguin

Moderator
Staff member
From our 11 years of experience
The best of the best isn’t always what it’s cracked up to be
It’s more important to have a specialist who listens to you and your child
Isn’t afraid /angry /resentful if you seek a second opinion
Realizes early in your child is the one who knows what is going on with their body regardless of test results
And works well in the sandbox with other specialists.

my kiddo has seen top in their field docs across the country who wouldn’t listen

it took a bit but he know has a team of docs who talk to each other and my child to come up with the best plan forward

the top hospitals for pediatric ibd are listed by world news and reports
I haven’t looked in a while but Cincinnati childrens , Boston childrens and children’s of Philadelphia are typically tops
They will do online second opinions
 
This is helpful thank you! Things have been missed that could have been prevented or treated earlier and resulted in an ambulance ride and hospital visit; while the doctors are nice, I also want to make sure I'm giving my son the best care, especially since I know we have years and years of sorting through this. I don't know if Children's-Milwaukee is our best option in Wisconsin.
 
Most medical schools have a solid IBD clinic or department - Medical College of Wisconsin in Milwaukee for example, although their big IBD doc, Dr. Yarur recently moved to Cedars Sinai in Los Angeles. But the staff still there are perfectly fine.

If you really want a big name IBD doc, how far are you willing to travel? Chicago has several prominent IBD docs: Dr. David Rubin at Univ. of Chicago and Dr. Steven Hannauer at Northwestern. And there is also Dr. Loftus at the Mayo Clinic in Rochester, MN.

One thing about these big name docs is that, beyond perhaps an initial visit, most of your care there will actually be provided by the more junior docs on the staff. The famous docs are often very busy with research and flying off to speak at medical conferences.
Thank you this is helpful! I just want to make sure he's getting the best care as some things have been missed and I don't want to miss anything more.
 
Most medical schools have a solid IBD clinic or department - Medical College of Wisconsin in Milwaukee for example, although their big IBD doc, Dr. Yarur recently moved to Cedars Sinai in Los Angeles. But the staff still there are perfectly fine.

If you really want a big name IBD doc, how far are you willing to travel? Chicago has several prominent IBD docs: Dr. David Rubin at Univ. of Chicago and Dr. Steven Hannauer at Northwestern. And there is also Dr. Loftus at the Mayo Clinic in Rochester, MN.

One thing about these big name docs is that, beyond perhaps an initial visit, most of your care there will actually be provided by the more junior docs on the staff. The famous docs are often very busy with research and flying off to speak at medical conferences.
Do you know of any conferences non-medical professionals can attend that are beneficial?
 

Scipio

Well-known member
Location
San Diego
Do you know of any conferences non-medical professionals can attend that are beneficial?
I don't know any IBD conferences that are aimed at the non-medical community. But you don't absolutely have to be a medical professional to attend most of the ones that are out there. You can just register as an individual and attend. But the talks and poster presentations will all be drenched in scientific and medical terminology and jargon that may limit your understanding of what they are talking about. Also, if you are not a member of the medical society putting on the conference and/or not eligible for discounts extended to medical students or junior doctors, the registration fee will be quite pricey.

Some examples: Crohn's & Colitis Congress will be in Denver in January. Digestive Disease Week will be in Chicago in May. The American College of Gastroenterology annual meeting usually occurs in the autumn, but I don't think the exact dates and venue for 2023 have been set yet. The whole medical meeting biz is not yet fully recovered from the chaos caused by COVID-19.
 

Maya142

Moderator
Staff member
CHOP has a Pediatric IBD Education Day. I know you are not near Philadelphia, but often their presentations are online.
For the top GI hospitals, usually CHOP, Boston Children's and Cincinnati Children's are usually the top 3. We got great care at CHOP and I know they do second opinions and Boston Children's actually does a virtual second opinion which may be a good option. Over the years, we've found that getting a second opinion can be very helpful, even if it means driving or flying to the best doctors.
Feel free to post about questions and concerns here.
 
I would also add Mt. Sinai to the list. We see Dr. Spencer (others are great as well). She sees patients 2 days a week and works on her research the rest of the week. Super, super friendly, honest and easy to work with. She replies all mychart messages personally (w/o having a nurse filter the messages) and will call to chat - this is a huge, positive surprise. When she calls, she not only brainstorms with me but also shares all kinds of research data including what she's working on. She's a IBD patient herself so I feel she can relate better to what we are going through. Mt Sinai also uses IUS in all visits so everyone in the room can see visually how the patient is doing.

Yesterday she and other staff at Mt. Sinai did a presentation to a medical team in Ukraine. I dialed in from my house - staying connected with experts in the field is quite easy now since the pandemic opened up the teleconference mode of info sharing.
 
CHOP has a Pediatric IBD Education Day. I know you are not near Philadelphia, but often their presentations are online.
For the top GI hospitals, usually CHOP, Boston Children's and Cincinnati Children's are usually the top 3. We got great care at CHOP and I know they do second opinions and Boston Children's actually does a virtual second opinion which may be a good option. Over the years, we've found that getting a second opinion can be very helpful, even if it means driving or flying to the best doctors.
Feel free to post about questions and concerns here.
Thank you! This is really helpful. I'm not sure if you have any experience with your kids with constipation? He is struggling with that and has done a full clean out of Miralax and it keeps coming back. Dose 3 of Inflectra last week. He also has to be on a low fiber diet from strictures. I'm wondering if Miralax is the only option right now?
 
I would also add Mt. Sinai to the list. We see Dr. Spencer (others are great as well). She sees patients 2 days a week and works on her research the rest of the week. Super, super friendly, honest and easy to work with. She replies all mychart messages personally (w/o having a nurse filter the messages) and will call to chat - this is a huge, positive surprise. When she calls, she not only brainstorms with me but also shares all kinds of research data including what she's working on. She's a IBD patient herself so I feel she can relate better to what we are going through. Mt Sinai also uses IUS in all visits so everyone in the room can see visually how the patient is doing.

Yesterday she and other staff at Mt. Sinai did a presentation to a medical team in Ukraine. I dialed in from my house - staying connected with experts in the field is quite easy now since the pandemic opened up the teleconference mode of info sharing.
Thank you! If you have any resources you have found that are helpful and can send on that would be great. I looked her up and will see about reaching out, depending on insurance, etc.
 
Thank you! This is really helpful. I'm not sure if you have any experience with your kids with constipation? He is struggling with that and has done a full clean out of Miralax and it keeps coming back. Dose 3 of Inflectra last week. He also has to be on a low fiber diet from strictures. I'm wondering if Miralax is the only option right now?
My son has chronic constipation too. He's on Miralax initially and it stopped working for him. I started using " Pedia-Lax Laxative Chewable Tablets for Kids" and it's worked for him (he is 13). I do 3 pills and a glass of warm water and I feel it's better than Miralax.
 

my little penguin

Moderator
Staff member
My kiddo has constipation as part of his crohns
He has to stay on daily dose of miralax
He does not stop miralax after a clean out

please not miralax is not a laxative
It’s an osmotic
It pulls water from the body into the stool so it’s easier for the gut to move

daily laxatives are NOT recommended
Please talk to your child gi
 

Maya142

Moderator
Staff member
You should talk to your GI about his constipation if Miralax isn't working. Your body can become dependent on stimulant laxatives, so it's best to check with your GI before starting anything new. My daughter struggled with constipation and has severe Gastroparesis (delayed gastric emptying - poor motility). She was put on Milk of Magnesia when Miralax was not working. It's not a stimulant laxative - it's also an osmotic laxative too. When her gut motility got better, she went back to daily Miralax. But it really depends on the situation and especially since your son has strictures, I'd urge you to consult your GI.
 

crohnsinct

Well-known member
Another thing you could do is look at Improve Care Now. They are a network of childrens hospitals all working together to improve care for pediatric IBD. Any hospital in this network is a good bet for finding knowledgeable, research driven, good care. Just to throw another front runner into the mix a tad closer to you Pittsburgh Childrens also ranks up there. Old age is causing a lapse in memory on the name. I will look it up.

Constipation could be from a number of issues, including small bowel inflammation. Therefore, it us important you run it by the GI and if they have a registered dietician on staff, them as well. It will take a multi prong approach but you definitely want to let the GI know what is going on because it could be more than run of the mill constipation.
 

crohnsinct

Well-known member
Wanted to add that Cleveland Clinic is also a top notch IBD center with Miguel Ruggiero, Florian Rieder and Ben Cohen, all industry leaders. They are at the adult hospital but they collaborate with the childrens hospital. Cleveland Children’s just hired Dr. Sandra Kim (from UPMC) to head up their IBD program. She is very well known and gets great patient reviews.
 
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