Crohn's Disease Forum » Parents of Kids with IBD » Parents of Pre-Teens and Teens with IBD

08-19-2017, 05:53 PM   #541
#sam's mom
Join Date: Aug 2017

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HI, I am new to the forum. My 12 year old son was diagnosed with fistulizing crohn's 3 years ago. He was on Remicade every 6 weeks for 1 1/2 years but unfortunately it was not the magic treatment it is for so many, but he felt pretty good. When the fistula had not closed the GI took him off and tried Humira (on which he was so sick! high fevers and severe crohns symptoms) then 6mp (again no relief and sick all of the time) doctor put him back on Remicade (thankfully he had not developed antibodies) and he has been on it at maximum dose every 4 weeks and methotrexate and folic acid for a year. Not only has his fistula not healed, a recent MRI reveals a small second fistula. Overall we are VERY thankful that he feels good most of the time despite his disease being so bad - he leads a normal and full life! All of his inflammatory markers always remain extremely elevated. Every year we see the surgeon about a possible Seton but he says since the fistula is not draining or bothering him the surgery could be more painful and if we could just get him into remission the fistula would heal.

He has a colonscopy this Thursday and his GI is pushing to change medication. She wants to combine 6mp and the Remicade, which we won't do because of the heightened risk of cancer in pediatric boys so her second choice is Stelara or Entyvio. We are VERY reluctant to switch because at least on Remicade he has maintained a good quality of life (able to attend school and play some sports and perform in acting/plays) even though the disease is not under control. Based on how sick he was off Remicade 70% relief seems better than the other possibility. We are also concerned because Stelara and Entyvio have not yet been approved for use in pediatric and thus the risks are not known. (let alone the possible costs) Please respond if any of you or your children have had similar experiences or have switched from Remicade to Stelara or Entyvio? THanks, #Sam's mom .
08-27-2017, 06:30 PM   #542
Senior Member
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Deleted because I didn't realized there was another post with the same question. I moved my reply there!
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis

Crohn's Disease Forum » Parents of Kids with IBD » Parents of Pre-Teens and Teens with IBD
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