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

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Laura G.
Regular Member


Date Joined Apr 2006
Total Posts : 121
   Posted 12/29/2008 7:42 PM (GMT -7)   
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)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/30/2008 5:36 AM (GMT -7)   
Hi Laura I don't know what to say here but sounds like he responed well to the pred. and glad he is a little better now. Which way is your Dr. swinging in his treatment and have you tried low residue diet? Where was his small spot located and his scope sounded fairly good .Is he taking a B-12 shot each month? As far as his fevers I really don't know my temp is usually below normal. Perhaps his small intestine is causing problems does he have hie TI?lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/30/2008 8:42 AM (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.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Laura G.
Regular Member


Date Joined Apr 2006
Total Posts : 121
   Posted 12/30/2008 10:34 AM (GMT -7)   
Thanks for responding. Steven lives on a low residue diet and his active inflamation was in the mucosa of the sigmoid colon as well as every biopsy showed high eosinophils to the point they have to at least acknowledge he may have EG. The small intestine has only been looked at by CT scan and nothing obvious showed up. As far as where the Dr. is going with treatment, that is a little bit of a mystery. When he sees you in the office he sort of lays out a plan, but when things change you don't actually get to talk to or see him much. He has an assiistant and she is sweet, but not real informative or able to answer many questions. I also worry that the CT scan missed the abscess, it took 3 CT scans to find the 2nd abscess he had a while back.

Thanks again for your replies,

Laura

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/30/2008 11:09 AM (GMT -7)   
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!
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 12/30/2008 2:16 PM (GMT -7)   
Hi LauraG... sorry your son is having trouble. I'm sure you are familiar with the Specific Carbohydrate Diet, but thought I'd throw it out, just in case! Also, does he take any probiotics? ....just trying to think of something that might help...
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 12/30/2008 2:30 PM (GMT -7)   
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
 
LDN


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/30/2008 4:07 PM (GMT -7)   
Hi What about ultra sound for abcess checking they found mine that way but then mine was grapefruit size. I don't know he probably cain't stay on pred forever has he tried Imuran? Does the pred. usually work for him?You said he had another perianal abscess did they find a fistula to go with it?lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 12/30/2008 5:14 PM (GMT -7)   
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.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Laura G.
Regular Member


Date Joined Apr 2006
Total Posts : 121
   Posted 12/31/2008 1:05 PM (GMT -7)   

Thanks everyone,

Steven has normal b12 and has been taking the Allopurinol for over 2 years with no fevers.  Of course you just never know.

Nanners- I also felt like the abscess went away a little too easily and will request the CT scan you suggested if his fever continues.

Hoping you all have a wonderful New Year!

 

Laura G/ Steven & Jenny/ both CD

 

 

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