I need some good advice! Sorry, it's long

Hi, I haven't posted here much lately. I usually post at Dragonpack for pediatric Crohn's, but that sight is a little slow right now.  I was hoping for some opinions before I call the Dr. tomorrow.  My son Steven age 14 (you might remember him from his abscess and 13 surgeries a couple of years ago) has been having a lot of trouble this year.  I will give you a basic rundown since 12/07.  I don't think that he has ever had remission for more than a few months, but he started having a pettechaie(sp?) rash.  Soon he started getting light-headed with blurred vision and cold clammy skin anytime he was walking for more than 15 minutes.  This was also coupled with bowel pain  and occasional diarrhea, but nothing horrible.  His Dr. felt he was fine because he is overweight and would ignore me.  We changed Dr's.  He felt it was IBS and since the pain was getting crippling he put him on Elavil.  That helped for a month or so and the pain returned.  He finally did a fecal calprotectin test and it showed a lot of inflammation.  They then added Flagyl which seemed to help a little for a while.  Next he had a Colonosccopy in October.  Everything looked good to the eye but one small spot.  The biopsies however showed a high eosinophil count throughout his entire colon and some active inflamation.  Soon after the colonoscopy he developed another perianal abscess.  He was given Cipro and seemed to get better.  2 weeks passed and he started running a fever, but a CT scan didn't show an abscess.  He continued with the fever, pain, fatigue and joint paint until last month when they finally put him on 60mg prednisone.  The pain and sporadic darrhea are partially gone along with most of the joint pain, but he still had a fever and fatique so as a last effort before admitting him they added 9 miligrams of Entocort.  If he didn't improve they were going to admit him on Dec. 23rd.  The rest of the pain  left and they let him stay home.  Now I am wondering why he still has a fever with all of the steroids?  I really just don't know what to think or do at this point.  I have thought that maybe his abscess is hiding and causing the fever.  Is it time to insist on Humira?

If you have any thoughts please let me know.  I just want to see him have a fairly normal life, and he just isn't physically up to it.

Laura G./ Steven- Azathioprine at therapeutic levels, allopurinol, omeperazol, elavil, flagyl, prednisone, entocort, allegra, cultutelle, and multi-vitamin-Remicade for a year but started having serum sickness

Post Edited (Laura G.) : 12/29/2008 10:16:23 PM (GMT-7)

I think you really need to push his docs a little more. I think maybe they should try doing a Ct Enterography on him as I tend to agree with you that there is something hiding in there. I had this test and it showed all my internal organs really clearly. It supposed to be even better than a regular CT Scan or C-scope. Hope you get this figured out soon. Give Steven a big hug for us.

Laura the CT Enterography is a little different than a regular CT they do on us. It shows way more than the others, thats why I suggested it. Good luck!

Most of the time when you run a fever it's the body's natural response to either inflammation or an infection. I had a low fever for several weeks and ended up in the ER. The fever broke shortly after they started the IV antibiotics.

Miss

Laura,
There is something that you might want to investigate is regards to your son's fever. There are certain medications that can cause something called "drug induced fever." There are several antibiotics and other meds that cause fever in some people. Myself, I remained hospitalized for 19 days following a procedure that would normally have me home in 3 days. The culprit was the antibiotic Macrodantin, commonly precribed for a bladder infection. Macrodantin caused me to have high fevers and made me very ill looking.

Your son is on allopurinol, correct? That is one of the meds known to cause fever. You might want to goggle "drug induced fever" and compare the list of known meds with what your son is taking. I know this is a long shot but given the inability of the doctors to discover a cause, I thought I would suggest it.