humira-hospital-remicade
Some of you might remember me, or my daughter I should say. She has Rett syndrome, is non verbal and diagnosed with crohn's in Feb. after lots of prednisone, weans and bumps and weans, she's almost off of it and had started on Humira about 2 1/2 weeks ago.
Well, alot has happened since, last week she was in tremendous pain and since she is non verbal we have to assume it's crohn's, she hasn't had any evidence of anything else besides small intestinal erosion, multiple eleveted sed, calprotectin and saccharomyces cerevisiae levels. So, last Monday, I called her GI doc and told him how terrible her pain is, he just happened to be doing his hospital rounds at the children's hospital so he said to come on down and have her admitted and we'll get to the bottom of this. So, we did, packed a bag and drove the 2 1/2 hours to get there. She was in so much pain, it was a really long drive. They gave her morphine and dilauded in the ER and neither touched her pain. They did an abdominal xray right away, but nothing and we expected that, probably just routine.
So, they did a ct scan the next day and that didn't show anything with her bowels at all, but she had had a ruptured ovarian cyst at some point (now we're thinking it was in the days leading up the the hospital stay). The next day they did a colonoscopy, upper endoscopy and placed a pill camera. Her entire GI tract looked good, which he expected due to the prednisone she's been on. In the end we didn't really get many answers, mostly more questions about the ovarian cyst. But, since we had just started humira the week before and it can take a while to start working, he decided to switch her to remicade so she had an infusion that night and we went home the next day. We have an appt with a gynecologist next week but in the meantime, she's MUCH better, she's had 2 glorious pain free days and sleeping at night without sleeping meds. That is huge for her because when she feels bad, she won't sleep. Oh and since poop talk with Crohn's is very popular, yep...pooping normal too
Anyway, this is getting long but I just wanted to let some of you know who've been following us along. We sure appreciate the support! And, I hope to say that Remicade is our new friend, she goes next week for her 2nd infusion.
Thanks,
Tammy and Rachel (16)
Some of you might remember me, or my daughter I should say. She has Rett syndrome, is non verbal and diagnosed with crohn's in Feb. after lots of prednisone, weans and bumps and weans, she's almost off of it and had started on Humira about 2 1/2 weeks ago.
Well, alot has happened since, last week she was in tremendous pain and since she is non verbal we have to assume it's crohn's, she hasn't had any evidence of anything else besides small intestinal erosion, multiple eleveted sed, calprotectin and saccharomyces cerevisiae levels. So, last Monday, I called her GI doc and told him how terrible her pain is, he just happened to be doing his hospital rounds at the children's hospital so he said to come on down and have her admitted and we'll get to the bottom of this. So, we did, packed a bag and drove the 2 1/2 hours to get there. She was in so much pain, it was a really long drive. They gave her morphine and dilauded in the ER and neither touched her pain. They did an abdominal xray right away, but nothing and we expected that, probably just routine.
So, they did a ct scan the next day and that didn't show anything with her bowels at all, but she had had a ruptured ovarian cyst at some point (now we're thinking it was in the days leading up the the hospital stay). The next day they did a colonoscopy, upper endoscopy and placed a pill camera. Her entire GI tract looked good, which he expected due to the prednisone she's been on. In the end we didn't really get many answers, mostly more questions about the ovarian cyst. But, since we had just started humira the week before and it can take a while to start working, he decided to switch her to remicade so she had an infusion that night and we went home the next day. We have an appt with a gynecologist next week but in the meantime, she's MUCH better, she's had 2 glorious pain free days and sleeping at night without sleeping meds. That is huge for her because when she feels bad, she won't sleep. Oh and since poop talk with Crohn's is very popular, yep...pooping normal too
Anyway, this is getting long but I just wanted to let some of you know who've been following us along. We sure appreciate the support! And, I hope to say that Remicade is our new friend, she goes next week for her 2nd infusion.
Thanks,
Tammy and Rachel (16)
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