Worried in WI

[lanaklingenberg]

worried in WI

Good Morning Crohnies and Parents of Crohnies - Just a quick note asking for happy thoughts and prayers our way. Hannah has been sick for a week with what we thought at first was the flu. She had a fever as high as 103 mid week last week. While her fever hasn't gone that high again, it is still showing up from time to time. She also has the following symptoms: back pain, tight stomach, shortness of breath, fever, pale skin, rib pain, and is reporting that she is feeling like she is having panic attacks. We are going in for labs this a.m. Our concern is that the Cimzia (until week before last paired with Methotrexate) has suppressed her immune system too much. Also wondering if she might have pancreatitis. Hoping for answers and to get her feeling better. She is so discouraged.

 

[Crohn's Mom]

HI Lana ,

How is Hannah doing ?
I'm so sorry I (or I guess anyone) didn't see this thread sooner.

I saw your response to me in the Cimzia one and my understanding is that she has stopped the Cimzia ? Did you find out that this was what was causing her to be so ill ?

I sincerely hope she is feeling much better since you posted this !:ghug:

 

[lanaklingenberg]

Thanks! Its been a crazy month. When I posted that it turned out that Hannah had the good old flu. However, she lost 5 pounds that week and began spiraling down. A couple of weeks later she was to the point where even drinking water hurt. We scheduled an MRI thinking she must have an obstruction. She did - but not from Crohn's inflammation - though she did have inflammation in her small intestine. She had something called SMA syndrome. . . basically a mechanical obstruction caused by not enough abdominal fat (google it for a more medical description). Anyway - 4 days in the hospital; NJ tube (for a couple of more weeks) and doing pretty good. She is back up to the pre-illness weight and happy to be finishing the school year at home. The upside was that the MRI confirmed that the Cimzia wasn't cutting it. Her doc thinks she has a type of Crohns that doesn't respond to TNF blockers. She is on prednisone to calm things down and starting 6 mp. She did well on 6mp early in her disease but had to stop b/c it caused neutropenia. We are hopeful that it will help with her disease this time w/o the blood issues. Frankly, we are out of new medication options. Keeping a close eye on the stem cell/gene repair research going on in Chicago. Thanks for your post! I have heard that Cimzia works well for many people w/o many side effects.