- Joined
- Jun 28, 2012
- Messages
- 1
My daughter Kaycee was dx with Crohns in fall of 2011. This was really not unexpected with her background. Kaycee has Turners Syndrome, was dx when she was 8 years old. Placed on growth hormones. When she was 10 started having stomach issues and was dx with UC. Kaycee was placed on every drug I believe there was and was also hospitalized several time with prednisone iv therapy. When this stopped working started receiving Remicade infusions, when this stopped working Humira. Within one year of her DX we had to have her total colon removed and she was constructed with a JPouch. After a few years of healing and trying to act like a normal child or teen as I should say now, she started having bone issues. Her right hip completely snapped into and had to have 3 pins placed in her freshman year of high school. Since then has had 5 stress fractures in total in both legs one in her pelvis and one in her lower back. In April of 2012 (now in her sophomore year) had her left hip brake and had 3 more pins placed in them. We are still tiring to figure out what has weakened her bones so. Was it the growth hormones or all the drugs given to her with her UC? We see a bones specialist in Aug. While Kaycee was on the drugs for UC she had extreme weight gain and was up to 160 pounds in 6th grade, this is for a little girl of maybe 4 feet tall if that much. After her surgery to remove the colon she lost an extreme amount of weight and was actually too thin. We had to find the right kind of foods that she could and keep the weight on. Kaycee has become a very healthy eater. In October after a bout of Pancreatis, they took her off her other drugs for Crohns and placed her back on Remicade infusions. She has gained 30 pounds since. I have asked her GI doctor and he does not think it is the Remicade. I have spoke with her Encro doctor and we had her thyroid tested and it is not that. Has anyone out there experience extreme weight gain with Remicade? We have so many specialist we go too already and have tried to coordinate all this with all of them. Sometimes I feel like they are just trying to pass the buck to another doctor. I have a 16 year teenage girl now who just wants to be a normal teenager. She is the healthiest eater I know and swims and exercises 3 to 3 1/2 hours a day...EVERY DAY and is still gaining weight. Help please I need her to be healthy and happy for once in her life. Thank you
