Hello! I have been reading these threads for awhile and have realized how supportive and comforting you are to eachother! I have finally decided to post my story. I have two kids with Crohns, my son Trevor is 18 and diagnosed in 2010. My daughter Olivia is 16 and diagnosed at age 10. The past 6 months have been a nightmare...just a quick history. Olivia had been treated with 6mp
initially until she developed an obstruction in 2008 that required surgery-18 inches of small bowel removed. Immediately before the surgery, her GI decided to try Remicade hoping her stricture was inflammation versus scar tissue. Of course, she showed no improvement, so she had the surgery. After surgery, MD continued the 6mp to prevent reoccurrence of the CD. In March of 2011, her liver enzymes were elevated and a scope showed active disease(with bleeding), so GI put her on Humira (he was nervous about restarting Remicade for fear of an infusion reaction). Humira helped her pain and bleeding, so all was good. A month after starting Humira, Liv developed a cellulitis from a bug bite-her leg was swollen, she could barely walk. A surgeon excised and drained the lesion and she was put on megadoses of antibiotics, which of course irritated the CD. 2 more of these "skin Lesions" followed-she was on Humira for 5 months and 3x had bad cellulitis in extremities.
In Sept. 2011, Liv went for her well physical and her MD found a mass on her thyroid gland. Within a week we had sono and biopsy done and received a diagnosis of papillary thyroid cancer! At this time, my son had also failed 6mp and we had to go to Remicade...I felt my whole world come crashing down on me. Back to Liv..GI stopped the humira immediately, took her off all meds so we could treat the cancer. After a thyroidectomy and radioactive iodine treatment, a nuclear scan in Feb. showed all cancer is gone and no metasteses, Thank Goodness. Fast forward to now...Liv is still not back on maintenance meds (GI started Entocort in Dec when scope showed lesions and bleeding) Promethius markers and LF stool samples show severe inflammation (done 3 weeks ago). My dilemma? Ped Gi wants to put Liv back on Humira. 2nd, 3rd and 4th opinions from some well respected GI's and oncologists in the NYC area leave me completely confused. Some say yes, put her back on biologics, others say absolutely not! One MD recommended we put her on thalidomide! Ped. Gi doesn't think methotrexate will hold her and has had no experience with Cimzia, so he wont prescribe it. Yes, we still run the cancer risks, but maybe she won't develop skin issues. Another Md said that he would just keep her on the Entocort until she becomes symptomatic! I am so stressed and my brain hurts from thinking all the time..I hate these decisions, I don't want to cause my child more harm. Of course there are serious risks either way. Liv is doing ok, a bit fatigued, sl pale, and lost 3 lbs.
This impending feeling of doom is overwhelming! I have started her on curcumin and n-acetyl glucosamine for the possible benefits, and I will consult with another MD on Monday(not a GI) about maybe trying Liv on LDN. At this point we have nothing to lose! I am sorry this is so long! My son is actually doing well on Remicade..he is always worried about cancer now, but his CD was more extensive than Liv's-small bowel, stomach and esophagus involvement. My Mom also has CD, although a very benign case diagnosed in her 40's. I hate this disease...I pray everyday for a cure or at least some safe, effective meds for our children. Thank You for listening/reading. Kim
initially until she developed an obstruction in 2008 that required surgery-18 inches of small bowel removed. Immediately before the surgery, her GI decided to try Remicade hoping her stricture was inflammation versus scar tissue. Of course, she showed no improvement, so she had the surgery. After surgery, MD continued the 6mp to prevent reoccurrence of the CD. In March of 2011, her liver enzymes were elevated and a scope showed active disease(with bleeding), so GI put her on Humira (he was nervous about restarting Remicade for fear of an infusion reaction). Humira helped her pain and bleeding, so all was good. A month after starting Humira, Liv developed a cellulitis from a bug bite-her leg was swollen, she could barely walk. A surgeon excised and drained the lesion and she was put on megadoses of antibiotics, which of course irritated the CD. 2 more of these "skin Lesions" followed-she was on Humira for 5 months and 3x had bad cellulitis in extremities.
In Sept. 2011, Liv went for her well physical and her MD found a mass on her thyroid gland. Within a week we had sono and biopsy done and received a diagnosis of papillary thyroid cancer! At this time, my son had also failed 6mp and we had to go to Remicade...I felt my whole world come crashing down on me. Back to Liv..GI stopped the humira immediately, took her off all meds so we could treat the cancer. After a thyroidectomy and radioactive iodine treatment, a nuclear scan in Feb. showed all cancer is gone and no metasteses, Thank Goodness. Fast forward to now...Liv is still not back on maintenance meds (GI started Entocort in Dec when scope showed lesions and bleeding) Promethius markers and LF stool samples show severe inflammation (done 3 weeks ago). My dilemma? Ped Gi wants to put Liv back on Humira. 2nd, 3rd and 4th opinions from some well respected GI's and oncologists in the NYC area leave me completely confused. Some say yes, put her back on biologics, others say absolutely not! One MD recommended we put her on thalidomide! Ped. Gi doesn't think methotrexate will hold her and has had no experience with Cimzia, so he wont prescribe it. Yes, we still run the cancer risks, but maybe she won't develop skin issues. Another Md said that he would just keep her on the Entocort until she becomes symptomatic! I am so stressed and my brain hurts from thinking all the time..I hate these decisions, I don't want to cause my child more harm. Of course there are serious risks either way. Liv is doing ok, a bit fatigued, sl pale, and lost 3 lbs.
This impending feeling of doom is overwhelming! I have started her on curcumin and n-acetyl glucosamine for the possible benefits, and I will consult with another MD on Monday(not a GI) about maybe trying Liv on LDN. At this point we have nothing to lose! I am sorry this is so long! My son is actually doing well on Remicade..he is always worried about cancer now, but his CD was more extensive than Liv's-small bowel, stomach and esophagus involvement. My Mom also has CD, although a very benign case diagnosed in her 40's. I hate this disease...I pray everyday for a cure or at least some safe, effective meds for our children. Thank You for listening/reading. Kim
