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Crohn's Disease Forum » Parents of Kids with IBD » Have you been to CHOP???


05-15-2014, 01:31 PM   #1
Gmama
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Have you been to CHOP???

Well I'm sad to say the Remicade does not seem to be "kicking in" for my poor boy. So hubby & I are going to take our frustrations and LJ to CHOP.
We were told to see Dr. Baldassano...has anybody seen him???
Any thoughts on our situation would be appreciated!
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Ginger
mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Pentasa
Folic acid
Iron
Methotrexate
Back on Humira 8/22/14
Failed
Remicade 11/22/13-7/24/14
Flagyl/Cipro
Imuran
Humira 7/13-11/13)
Entocort
05-15-2014, 05:12 PM   #2
kimmidwife
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We saw him. Honestly we were not that impressed but our case is a little different. We are dealing with other issues besides straight crohns. Will you use him as your regular doctor because I think they would be better for that then as a second opinion and then going back to the regular doctor. As a second opinion they just didn't seem willing to do much they kept saying your regular doctor needs to take care of that.
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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.
05-15-2014, 05:57 PM   #3
Maya142
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We've been to CHOP and were impressed by both rheumatology and gastroenterology. In our case, the rheumatologist we saw was more helpful because she had lots of ideas for us.

The GI just confirmed that M had Crohn's (which is what I was trying to deny) and that Remicade was a good idea for both issues. She said if the Remicade didn't work then the next step would be try a combination of an immunomodulator + Remicade (possibly 6MP).
M is pretty straightforward in terms of Crohn's so we weren't looking for much. I've heard that Dr. Baldassano is the one to go to if you can get an appointment.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-16-2014, 08:57 PM   #4
Gmama
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Thanks Kim & Maya! To be honest I'm not sure if we would end up using them as his regular doc. It would be difficult but possible. At this point I feel like we need some decent advice from someone who sees the difficult cases on a regular basis. Maybe I am expecting too much?!? I feel like we have to at least try to get an appt.
05-16-2014, 09:17 PM   #5
Maya142
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I would definitely try it - we got good advice from the rheumatologist and M is a very difficult case in terms of rheumatology because we've basically tried everything.
I hope the GIs can help your boy!
05-16-2014, 11:19 PM   #6
Brian'sMom
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Our KC GI said Dr Baldasano is very open about himself having crohns... and as a kid also. She said he's currently on supplemental EN and Humira. Interesting I thought. Good Luck... as for personal experience... Sorry I don't have any. We went to Mayo in Minnesota. We were happy with the doctors there. (They have stayed on my son's case and actually are happy to be the lead... they work with the GI's here... but for any big stuff we travel up there.) So my only advice would be to decide what you want out of the visit and ask questions before you go. We didn't go to CHOP because I asked Dr Baldasano's scheduling nurse: If we really like him... and we are willing to travel... will he be my son's GI? She told me 'no'... He would be a 2nd opinion for us only. But we also live in Kansas. So that's quite a long ways away. Mayo is only a 6 hour drive for us. So it's close.
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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.
05-17-2014, 07:46 AM   #7
my little penguin
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Second the questions :
Second opinions typically confirm dx or
Verify treatment plan .
Most will not see them as on going patients for anything over two hours.
They also can't make up new treatments .
The treatment list for crohn's is limited regardless of where your at.
5-ASA
Immunomodulators
Biologics
Combos of immunomodulators plus biologics

And various combos of EEN , creams , suppository , enemas or pred.
Sometimes adding vitamins to the mix/probiotics.

That its unless you are trying experimental /off label
Stelara or tacro .


I wish there was more.

Our first second opinion was really important since it confirmed DS odd presentation of crohn's and bumped up treatment.
The second second opinion we did nt learn anything new or change anything - kinda disappointing at the time .
That was when we had to face the limitations of the meds .

Both times our current GI was very supportive of us going .
I think its important to include your Gi in the discussion as well.
Some may have ideas given your child's history who might be best to see since they know the doctors style .
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05-17-2014, 12:59 PM   #8
Gmama
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Thanks for the replies!
MLP-that is exactly what hubby has been saying...the meds are the meds and it's a short list.
I think we are birth just so disappointed that we are near the end of the list and nothing seems to be working. We have not added anything to the Remi, so maybe a combo is still an option. He has already failed imuran, so I guess it would be MTX
I don't think even our GI thought it would be this hard to get LJ into a remission. At out last visit, infusion #5 he was still very much on the page of the Remi can take lots of time to "kick in"
05-17-2014, 01:34 PM   #9
my little penguin
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The thing to remember :
Remicade can be increased and interval shortened- this helps alot- most kids do not have 8 week intervals ( just too long) DS was 7.5 mg/kg every 6 weeks.
also added 6-mp or mtx increases the effectiveness of the drug - even if the med ( 6-mp) did not work alone.
adding EN to biologics also helps with the inflammation.

a fresh set of eyes maybe more aggressive with treatment - some gi's are conservative.
RHeumo's tend to be aggressive- our rhuemo for Ds is always pushing .

to give an Idea last fall DS was on:
HUmira 40mg/every other week.
prescription probitocs
rectal suppositories steriods
Asacol
EN
miralax
Prevacid

The GI was thinking of adding enemas as well.


so not a one med wonder.

He is now on prescription proboscis
humira
zantac
Iron
EN
Miralax
mobic( NSAID)- joints

Rheumo is thinking of adding more meds---

so things can change


good luck
07-29-2014, 06:46 PM   #10
isabellel94
 
Join Date: Jul 2014
Location: Amherst, Massachusetts
I know this is from a few months ago but I'm at CHOP and would be happy to talk if you would like!
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