My daughter was diagnosed with Crohn's. She started having symptoms at six years of age. She has been on numerous medications over the last four years, none of which have worked. She is ten now and steroid dependent. Our next move is to try Remicade. I'm scared. I feel like we're running out of options and she is just a baby. That's the short of it. I'm here looking for support, advice, answers, anything. Thank you.
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Ten year old daughter struggling with Crohn's
- Thread starter lbridge
- Start date
Please check out the parents forum
http://www.crohnsforum.com/forumdisplay.php?f=49
Lots of parents of little ones on there.
DS was dx at age 7.
He was placed on remicade by age 8- miracle drug.
He is an allergic kiddo all around so no one was surprised when his body started to fight remicade after 8 months .
He started humira last April 2013 and has been on it ever since .
By far biologics have had the least side effects of all the drugs DS has tried and the best at treating the disease so he doesn't feel sick.
He has tried 5-ASA, 6-mp in various combinations and Mtx.
Feel free to vent in the parents group
We all do .
http://www.crohnsforum.com/forumdisplay.php?f=49
Lots of parents of little ones on there.
DS was dx at age 7.
He was placed on remicade by age 8- miracle drug.
He is an allergic kiddo all around so no one was surprised when his body started to fight remicade after 8 months .
He started humira last April 2013 and has been on it ever since .
By far biologics have had the least side effects of all the drugs DS has tried and the best at treating the disease so he doesn't feel sick.
He has tried 5-ASA, 6-mp in various combinations and Mtx.
Feel free to vent in the parents group
We all do .
- Location
- Pawleys Island, SC
Ibridge,
My daughter was just diagnosied in March 2014 at age seven. Our GI thought starting Emily with Remicade would be the best treatment option. It has great success. My husband and I were both afraid of possible side effects, but we went with the Remicade. Emily after just the third infusion had her colonoscopy last Friday and the healing was amazing. She is considered to be in remission.
I wish your daughter the best.
~julia
My daughter was just diagnosied in March 2014 at age seven. Our GI thought starting Emily with Remicade would be the best treatment option. It has great success. My husband and I were both afraid of possible side effects, but we went with the Remicade. Emily after just the third infusion had her colonoscopy last Friday and the healing was amazing. She is considered to be in remission.
I wish your daughter the best.
~julia
- Location
- Montréal, Canada
Have you tried enteral liquid diet? Exclusion diet?
EEN ( enteral nutrition - formula only) can be used instead of prednisolone but is not a maintence med
En ( formula plus food) can be used a adjunct therapy.
DS used peptamen jr as EEN for 9 weeks at dx and continued with en in addition to his other meds . He currently drinks 2-3 shakes a day.
This helps with grow and nutrition.
Most kids with Ibd are below the 25%
Because of en and biologics he is back to the 70% for both.
En ( formula plus food) can be used a adjunct therapy.
DS used peptamen jr as EEN for 9 weeks at dx and continued with en in addition to his other meds . He currently drinks 2-3 shakes a day.
This helps with grow and nutrition.
Most kids with Ibd are below the 25%
Because of en and biologics he is back to the 70% for both.
lbridge welcome. Remicade can be a great medication and works for many kids. Even if you have been through the immunosupressants or other meds there are combo solutions if for some reason you don't get the biologic to do all it should.
Steroid dependency stinks. My kid can't step below 15 mg & currently I think she may have to step up to 20. Venting is encouraged here! We all need to do it with parents that get it & the people here definitely understand!
Steroid dependency stinks. My kid can't step below 15 mg & currently I think she may have to step up to 20. Venting is encouraged here! We all need to do it with parents that get it & the people here definitely understand!
My son was diagnosed at 10 now he is 15, we have been through so many of the meds, Imuran, methotrexate, LDN, Pentasa, Apriso, EEN. He did really well on them but wasn't ever quite to total remission still lacked an appetite and had very little growth and weight gain was almost non existent. It was not until remicade which we started in January that we have finally seen a solid remission. He is still behind his peers in terms of growth but he is finally growing.
We were reluctant to move to remicade as we always felt that we needed something in our back pocket so to speak we finally were at the point we had tried everything so we needed to give it a shot and if it worked it would hopefully work through his growth years (hopefully longer) and new meds are being studied all the time so if and when it quits working there are or may be other options.
We were reluctant to move to remicade as we always felt that we needed something in our back pocket so to speak we finally were at the point we had tried everything so we needed to give it a shot and if it worked it would hopefully work through his growth years (hopefully longer) and new meds are being studied all the time so if and when it quits working there are or may be other options.