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Crohn's Disease Forum » Parents of Kids with IBD » Have any other parents taken their kids to Mayo Clinic for second opinion?


03-12-2013, 06:37 PM   #1
kermit
 
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Have any other parents taken their kids to Mayo Clinic for second opinion?

My 9 year old son was diagnosed in May with UC, then in October after a colonoscopy, they confirmed he had Crohn's.

We have struggled with a variety of treatments, that have not had a great deal of success. He is currently on Remicade, Steroids, Zantac, Pepteman JR, and a cramping medication. He continues to have diarrhea several times and day, blood in every stool, severe cramping after eating, and moodiness.

I am wondering if anyone has gone to Mayo clinic and had success?? Please share any insight...
03-12-2013, 06:43 PM   #2
Farmwife
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Sorry no Mayo clinic here. I do know that Cincinnati is one of the best pediatric IBD centers in the country. Could you get there?

I think Crohns Mom DD goes to Mayo. But I think it's in California? She'll be along sometime.

What does the GI say about all the symptoms still?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-12-2013, 06:50 PM   #3
Jmrogers4
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Welcome Kermit
Sorry no experience with Mayo here either, but I agree with farmwife. Seems to be having a lot of symptoms still. How often are the infusions?
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-12-2013, 06:51 PM   #4
kermit
 
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We are in Illinois..the closest one is in Minnesota. Our GI doc is upping his remicade dose which scares me because he is only 54 pounds. He continues to check his stools for c-diff which comes back negative. His blood level is at 9, so he put him on an iron pill. I'm just very frustrated and feel like he will never get the relief he so wants!
03-12-2013, 06:52 PM   #5
kermit
 
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He is getting remicade every 8 weeks at this point.
03-12-2013, 06:58 PM   #6
Farmwife
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I'm just very frustrated and feel like he will never get the relief he so wants!

Boy, have you come to the right place.
We've all been there. I'm still there.
03-12-2013, 06:58 PM   #7
Jmrogers4
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There are others on here who can give you a lot more info on remicade and dosage - paging my little penguin, clash - I can tell you it took us a while to find the right medicine/dosage to get to the point where my son was at a point where he felt well. Lots of tweaking of medicine, adding and taking things away.
How many Pepatem is he drinking, is he doing that alone as EEN or as a supplement in addition to food
03-12-2013, 07:12 PM   #8
kermit
 
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Our doc talked about moving his infusions to every 6 weeks. Abe is taking pepatem in addition to food. We are restricting his diet per the dr request..no soda, chocolate, acid based food, raw veg, fried foods, but have not seen great changes with it.
03-12-2013, 08:00 PM   #9
Clash
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Welcome Kermit, I'm sorry that your son is still having problems. Before upping the dose has the GI mentioned testing for antibodies to Remicade, it would be the HACA test or testing his serum levels of Remicade to make sure he isn't burning through the Remicade too quickly?

My son is on Remicade, max dose, every 5 weeks along with 25 mg of methotrexate every week. He recently had an MRE that looked good and a colonoscopy that looked good all except the IC valve which was narrowed, but most likely not by inflammation. So we are still wading through, C does't have ab pain, cramping or D but has been experiencing joint pain(right knee) and we are trying to determine if it is CD flare related or unrelated.

Hope you find answers for your son soon!
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8/2014 ileocecectomy
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03-12-2013, 09:02 PM   #10
my little penguin
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Ds is on remicade at a higher level every six weeks . He never did make it out to 8 weeks.
We also took DS to cchmc ( Cincy) for a second opinion .
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03-12-2013, 09:14 PM   #11
Crohn's Mom
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Hi Kermit and welcome

FW is correct and my daughter does go to the Mayo Clinic, however it's in Florida.
You said you are closest to Minnesota one, which is the only one that accepts pediatric patients. From what I have heard, here and there, they have a wonderful pediatric hospital! And if they're anything close to being as good as the adult one here, than I'm sure it would be worth getting a second opinion there

I'm sorry your son is so ill still, and I hope he can get some better solutions soon.
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and Austin (18)
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03-12-2013, 09:17 PM   #12
kimmidwife
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Hi Kermit,
We lived in St. Louis mo and saw some good doctors there. I don't know where you currently are going. We had some issues with our daughter being allergic to or not responding to almost everything. We considered going to mayo in Minnesota. In the end we got a second opinion in New York. We now live in south Florida and the doctors down here are not great. There is a mayo clinic in Jacksonville fl. That one parent, crohns mom takes her daughter too. I think she has been happy with the care there.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
03-13-2013, 06:49 AM   #13
kermit
 
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Thank you so much for the insight!! I really appreciate the feedback. It's nice to know we are not alone on this journey!!
03-13-2013, 04:03 PM   #14
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Hey! I'm actually the patient myself, not a parent. When I was 16 (now 22) my mom took me up to the Mayo clinic in Minn from Atlanta. It was terrible and cold, but Dr. Fabian and his team were very helpful. They were the ones who put me on Humira, and I was in remission for years. It was nice and reassuring to have multiple docs with different specialties look at the whole body/picture rather than just focusing on Crohn's. Helped us to rule out lots of additional illnesses. I would like to go back now as an adult to get the full body review again, since my doc here doesn't want to admit something is going on!! Let me know if you have any specific questions. It was a big decision to go, but I'm glad we did!
03-15-2013, 11:51 AM   #15
Mehita
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We live in the Twin Cities and know a couple of families that go to Mayo and love it. One family sees the pediatric gastro dept there and they are very thorough. I can try and get the doctor's name if you'd like, but from what I hear, they are all good. I think what the families like is the multi-disciplinary approach. If a GI is stumped, they will chat with endo or other specialties. More of a whole child approach.

We go to the University of Minnesota Children's Hospital for my son and are very happy (they also have a multi-disciplinary approach) but it's nice to have Mayo in our back pocket too.

Just bring a parka!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
03-15-2013, 08:16 PM   #16
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Hi....we take our son to Mayo Rochester...and I cannot say enough good things about each and every person we have dealt with there. Mayo Rochester is the number 1 GI place for adults.....and they sure know their stuff for children too!
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