Crohn's Disease Forum » Parents of Kids with IBD » Where to find the best pediatric gastroenterologist?

09-11-2012, 11:06 AM   #1
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Where to find the best pediatric gastroenterologist?

We are getting very desperate for our son. Ever since he was diagnosed, 3 years ago, everything seem to get worse and nothing helps. For the last 6 months we have spent on average one week per month in the hospital due to anal bleeding, cramps, adenoviruses, pneumonia, skin problems,...

Now we are in the situation that we really need high level expertise, someone who could think out of the box. Do you have any idea where we could start our search? Can anybody recommend a doctor (who is not going to suggest Humira or surgery as the only options)? We are ready to travel anywhere, no matter what!

And finally, what do you think about the following list:
*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
09-11-2012, 11:35 AM   #2
my little penguin
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I would look at the improve care now network.
The two top places for Ibd in the US would be Boston children's and Chilren's hospital of Philadelphia ( chop).
I know Angie Izzi's mom I believe goes to BCH.

You can always ask for a records review before you travel.

Although not sure if you will get a much different answer other than biologics at this point but worth the effort so at least you know you tried.
Good luck
DS - -Crohn's -Stelara -mtx
09-11-2012, 11:35 AM   #3
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Hi Malgrave,

I have been corresponding with you on another thread of yours "when can we start".

I had a look at the list of top ped. gi doctors you posted. I just wanted to let you know that I live near the world renowned Texas Childrens Hospital. See below where I have pulled some top docs from your list in my area.

If you would like me to contact any of them for you, and be a liason for you let me know. You and your family are more than welcome to come and stay with me at no cost whatsoever if you would like to bring your son over for treatment.

If you would like me to I could approach the best of the best down here and let them know your situation, and ask if they have any ideas about how to proceed, let me know. If so, I would need you to email/post a brief medical history by time line. I would be more than happy to take it in for you.

I just want to offer this to you, in case you need it.
09-11-2012, 11:41 AM   #4
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Ditto to MLP's CHOP and Boston Children's. We aren't at Boston but our doc was trained and worked there for years, relocated to CT to start his own shop so to speak and we love him. Definitely a doc in a large well known for pediatric GI issues hospital.

But also ditto to MLP's comment...if you come to the states you will probably hear biologics.

Good Luck.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
09-11-2012, 01:27 PM   #5
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Could you try Addenbrooks or GOS in the UK? If you want to come to America, I too would try Boston Children's but again, as has been said, they will likely tell you to go on Humira (I'm not sure what you've tried and not but it sounds like it's a lot). They just don't have much more in their bag of tricks. I've had several opinions on my daughter's case and I would recommend Dr Athos Bousvaros at Boston. He's not just a good GI but he is truly kind and caring Dr. which I don't feel is common unfortunately. You can also contact them about sending in your son's file and them giving you an opinion long distance. They will let you know if you need to travel.
We've seen a team of pediatric docs in Rome - they are considered the best in Italy. They were okay but again, nothing new under the sun. I wonder if your son has tried something like anti-map therapy or LDN or some of the more alternative treatments?
Good luck to you - I hope you find some answers for your little one. I understand, we're at the very end of our rope too.
09-11-2012, 01:48 PM   #6
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Best GI I ever had was my pediatrics GI. He works at the Lucile Packard Children's Hospital in Standford California. His name it Dr. Ricardo Castillo.
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
09-11-2012, 04:13 PM   #7
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You can pick wherever you want to go and it will list most if not all of the doctors and their ratings along with patient comments. Of course you can't just go by that but if you see someone then continue to hear good things about that doctor it could really help.
Age 2 (1992)

Previous Meds:
Methotrexate (oral)
Methotrexate (injections)

Current Treatment:
200mg Simponi, Psyllium
09-11-2012, 07:56 PM   #8
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Ditto to biologics/surgery from Boston Childrens, and I am guessing CHOP will tell you the same thing. My local GI trained at CHOP...he is allowing us to stay on tacro/postpone surgery despite what Boston Childrens says. The choices are tough, I know. My daughter isn't "sick enough", but there are stem cell transplant trails in the states also. I believe you have to have tried bios to qualify for the study, though.
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
09-12-2012, 10:38 AM   #9
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Thank you, thank you, thank you all of you!!!
Just after quick look all the recommended hospitals seem to be excellent, now we just need to find the best expertise for our son
01-06-2014, 09:30 AM   #10
Join Date: Jan 2014
Location: Bloomington, Illinois
Simon Yu, MD in St. Louis thinks completely out of the box in his treatment of disease. Definitely not for everyone, but worth visiting his website and reading thru the numerous examples and testimonials to see if his style resonates with you and your family. Blessings to all, having a sick child is tough stuff.
01-06-2014, 05:04 PM   #11
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At Cincinnati Children's there are 22 pediatric GI's. My son's GI works specifically with Crohn's disease, so make sure where ever you go request someone who works only with crohn's.

Also, there is a place here (and near most of the big children's hospitals) called Ronald McDonald house and they provide housing for family members of ill children. Try to see if you could get them to take you. Reach out to someone on the forum that lives in the area you end up getting an appointment at and perhaps they can give you some contacts. The hospital should have good contacts too, ask about it when you inquire about an appointment.

Good luck, I will say a prayer for your sweet boy!
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
01-07-2014, 12:06 AM   #12
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I also agree that I haven't met any GI docs that don't go straight to biologics. (Our recent trip to Mayo in Minnesota was aggressive biologics). And I recently talked to Dr Burt's nurse (In Chicago) who does stem cell transplants. They told me under 18 yrs isn't considered. She wasn't aware of anyone doing this treatment on kids. But I remember someone on here talking about it for their son....I'll look for the thread. And I have heard that Canada does lots of trials from our GI in kansas, and there's many mom's on here from there.
Your threads earlier this year about IVIG treatment was so interesting. If I remember right, your son's immune deficiency was causing bowel issues. Is this treatment not helping anymore?
Prayers and best wishes you find a good doc. When you do... pass on his/her name!
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
08-25-2016, 01:26 PM   #13
Join Date: Aug 2016
Location: Murray, Kentucky
@johnnysmom- could you share with me the name of your child's Pediatric GI at Cinci? We are planning to go there for a 2nd opinion. My 9 year old was just diagnosed with Crohn's.

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