Hello,
My son was diagnosed with Crohn's at age 10 in Dec. 2009. He has been through such a horrible time. When he was diagnosed he apparently had had Crohns for awhile. His intestines/stomach had lots of ulcers and strictures. He told the Doctors that "he didn't know his stomach wasn't supposed to hurt like it did". Broke my heart because he had never complained before..
They immediately put him on Remicade which started the down hill spiral. He developed rashes,sweats,migraines, etc. The worst side effect was he developed RSD (reflex sympathetic dystrophy) which is a nerve condition. After several months of begging the Doctors to take him off Remicade, because he could not walk, we took him to Emory where they put him on Humira. That did ok for awhile with them pretreating his injections with prednisone and zyrtec. The side effects returned with a vengeance. His RSD flared up and his nerves started misfiring all over his body. They tried all sorts of medications to help ex. Neurontin/Lyrica. He missed his entire 5th grade school year. After hospital stays every month this year the Doctors finally took him off Humira to quite his nervous system. They felt his nervous system needed to quite down before they could try another Crohn's medication. They feel he is allergic to the Biologics but they don't think the next tier will work for him. (6-mp, methotrexate) They finally just put him on 6-MP hoping this will help until the Stem Cell Transplant becomes available for pediatrics. I am very nervous of the thought of the Stem Cell Transplant but my son needs his life back. He was such an outgoing, vivacious,happy kid who is now withdrawn. We just got back from 3 weeks at the Cleveland Clinic Pediatric Rehabilitation center for his RSD. His leg had atrophied and they needed to teach him how to cope with the pain.
This has affected our entire family. I have 2 other children that are 16 and 14 and had to watch their brother suffer.
If anyone has gone through the SCT and had results, I would love to hear from them.
Thanks
My son was diagnosed with Crohn's at age 10 in Dec. 2009. He has been through such a horrible time. When he was diagnosed he apparently had had Crohns for awhile. His intestines/stomach had lots of ulcers and strictures. He told the Doctors that "he didn't know his stomach wasn't supposed to hurt like it did". Broke my heart because he had never complained before..
They immediately put him on Remicade which started the down hill spiral. He developed rashes,sweats,migraines, etc. The worst side effect was he developed RSD (reflex sympathetic dystrophy) which is a nerve condition. After several months of begging the Doctors to take him off Remicade, because he could not walk, we took him to Emory where they put him on Humira. That did ok for awhile with them pretreating his injections with prednisone and zyrtec. The side effects returned with a vengeance. His RSD flared up and his nerves started misfiring all over his body. They tried all sorts of medications to help ex. Neurontin/Lyrica. He missed his entire 5th grade school year. After hospital stays every month this year the Doctors finally took him off Humira to quite his nervous system. They felt his nervous system needed to quite down before they could try another Crohn's medication. They feel he is allergic to the Biologics but they don't think the next tier will work for him. (6-mp, methotrexate) They finally just put him on 6-MP hoping this will help until the Stem Cell Transplant becomes available for pediatrics. I am very nervous of the thought of the Stem Cell Transplant but my son needs his life back. He was such an outgoing, vivacious,happy kid who is now withdrawn. We just got back from 3 weeks at the Cleveland Clinic Pediatric Rehabilitation center for his RSD. His leg had atrophied and they needed to teach him how to cope with the pain.
This has affected our entire family. I have 2 other children that are 16 and 14 and had to watch their brother suffer.
If anyone has gone through the SCT and had results, I would love to hear from them.
Thanks