Feeling Baffled

[Brian'sMom]

Some of you may have read about Brian awhile back having a mouthful of ulcers. It was wierd that a week ago most stopped hurting almost suddenly. Then a day later he had a fever of 101.4- Then the next day he was fine. And the next day after that (It was july 4th now). Then Saturday he had a fever of 100.2 which was then normal by bedtime. Sunday he ran a constant 99.5-99.7 while taking tylenol. So Monday our Mayo GI wanted us to go into the pediatrician to have labs done. The pediatrician did a strep test too because the back of Brian's throat looked rashy. But it didn't hurt. Dr and I both were surprised it didn't hurt due to how it looked. Rapid test negative. Now he's getting a couple ulcers under his tongue. (They aren't as painful as the others). No fever until today. Again, 101.2 and normal by bedtime. OK... Anyone still with me?!!! It's so confusing. Labs came back SED 51 CRP 4.4 (GI said consistant with having the fevers). White blood count 7.8, Iron level 11.4 (Up from 10), All other labs looked good. (And remember on June 11 Fecal Cal was 17). Soooo, here is what I'm thinking. GI thinks Brian had a virus (but he doesn't know yet about today's fever). Could this be crohn's in his throat? Or I was thinking as I was lying in bed.... Before his surgery- all while on EEN and also TPN he was on Zantac. Could the throat thing and even the ulcers be a result of acid reflux since he hasn't been on it since removing the picc line? That doesn't explain the fever tho..... I don't know what to do. One test that isn't back yet is the GI did blood cultures too. Not sure why. And the long strep test isn't back yet.

Sorry this is long and very confusing. That's life lately for us!!!

 

[Maya142]

M has been having fevers almost daily for 3 months or so, around 100.2- 100.4. Initially we did every test imaginable - multiple strep tests, blood cultures, mono etc. and everything came back negative. Her arthritis has been flaring and eventually her rheumatologist and GI decided the fevers were just a sign of disease activity for her. This seems to be true because when she was admitted for 4 days and given IV steroids, her temperature was normal the entire time she was in the hospital.
She's also just been diagnosed with anemia of chronic disease, with a hemoglobin of 9.4.

I have no idea about the throat ulcers (except that M has pretty bad acid reflux and she's never had those), but just wanted to let you know about our experience with fevers.
Any chance they could repeat FC to see if it's higher and he's flaring now?
Sending HUGS!

 

[my little penguin]

Can they get him into a children's dentist to biopsy the ulcers ?
I know at one point they were thinking of doing this with DS since his kept coming back.
They thought possible oral infection due to tnf blockers .
Any of the auto immune diseases can cause ulcers /recurring fevers -
Has he seen a Rheumo since they tend to deal with more of those than GI?
Plus once kids have one auto immune they tend to develop more ....

Bechets causes lots of ulceration including in the mouth and can be mistaken for crohn's on biopsies .

Big hugs to you and him

 

[MamaHenn]

Any chance it could be hand/foot/mouth disease? I can't remember the technical term but I do remember my daughter (non-IBD) had it last year and it sounds similar (although we did not have blood work done; it worked itself out).

 

[Brian'sMom]

Can they get him into a children's dentist to biopsy the ulcers ?
I know at one point they were thinking of doing this with DS since his kept coming back.
They thought possible oral infection due to tnf blockers .
Any of the auto immune diseases can cause ulcers /recurring fevers -
Has he seen a Rheumo since they tend to deal with more of those than GI?
Plus once kids have one auto immune they tend to develop more ....

Bechets causes lots of ulceration including in the mouth and can be mistaken for crohn's on biopsies .

Big hugs to you and him

Hadn't thought about the dentist route. The Ped said if this is still coming and going on Saturday I'm to bring him back in to walk in clinic. I hope and pray his body doesn't get other auto immune diseases! So far no symptoms but a few tender ulcers left and fever that comes and goes'

Any chance it could be hand/foot/mouth disease? I can't remember the technical term but I do remember my daughter (non-IBD) had it last year and it sounds similar (although we did not have blood work done; it worked itself out).

Hmmmm. Looked it up. He doesn't have anything on hands or feet. Just mouth. I read on the CDC site that in rare instances it goes to meningitus. That isn't good! It does say rare... but as you all know... We all have rare things happen with this dumb disease and dumb biologics and immune supressors!!

They did blood cultures Monday... so far they are coming back negative.

I want some PEACE!!! Is it ever coming??

 

[my little penguin]

I should have said oral surgeron since they would put DS out to do it .

 

[Jenn]

When my son had repeated bouts of viral pinkeye, we postponed his Humira a couple weeks to let his immune system loose to clear it up. That might help if it's a virus, obviously not if its IBD related. I'd think the higher fevers are virus induced, IBD tends to be lower-grade just in the evenings. Hope you get it figured out soon.

 

[Brian'sMom]

Jenn, That makes me feel better. They told me today that they don't want him to have any Cimzia or MTX to see if he can get better. They said to even just don't think about it until Monday and we'd see how he's doing. So they are thinking how your son's doc did. The nurse also hinted today that they are thinking of "the next thing' in way of meds for my son. Since his inflammation hasn't ever come down.. even after surgery.. I think they are thinking the TNF blocker isn't what my son needs. But I just really hate leading the "Experiment route'. All theses new drugs are just coming out of trials. It's scary.

 

[james's mum]

Hi
Please have a look at the first post you put up about the mouth ulcers, I explained a lot there. There is such a thing as Orofacial crohns ( in the face, mouth, throat).
Please check where I posted all the details and a link with further info.

Hope it helps.

James mum

 

[Brian'sMom]

The baffling part is the wierd fevers that are so brief.... He'll be fever free all day... or even 2 days.. then a random 101.7... or 1005. Enough to keep us from doing his Cimzia. Then after ONE dose of Tylenol the fever doesn't return.... Until 24 or more hours later. Just doesn't seem to be acting like a virus or crohn's.

 

[Clash]

That's how C's evening fevers were at dx, one evening it would be 100.2 then no fever for a day or so then one for one evening that would go away with Tylenol then would return the next evening but not the one after that. It was so weird. GI said it was common with CD but then closer to 1st colonoscopy it turned in to steady evening fevers. I never knew what to make of it.

 

[Maya142]

M's doctors have allowed her to remain on Remicade, Imuran and Sulfasalazine after determining her fevers were disease activity (we did a LOT of testing, saw an infectious diseases dr. etc.). Her fevers are lower though, the highest they go is 100.5.

 

[Tesscorm]

S's fevers pre-dx were same as Clash described. Fine during the day, fever at night, better the next day or two, then fever back at night. I actually started to notice a pattern that they seemed to start Thursday evenings, again Friday, Saturday but gone on Sunday??? I'd started to wonder if it was something in the arenas because, coincidentally, over those weeks, he always happened to have hockey on Thurs evenings. But, as his flare, I suppose, worsened, he began to have more fevers and fewer days without fevers.

 

[my little penguin]

Mild recurring fevers kinda goes with a crohn's flare or other autoimmune diseases .
Hope they get things under control soon.

 

[SCAR2003]

My daughter had the mouth/throat ulcers a month prior to showing other CD symptoms. At the time, we had no idea what it would be...

 

[jamesmom]

Brian's Mom - My son also suffered from weird fevers. In fact, that was his only symptom until we noted the weight loss. His fevers began as a weekly event, always in the late afternoon or evening, and always resolved by itself as my son would not take Tylenol or advil. The frequency increased from weekly to 2 -3 x per week, and then eventually daily. But even when the fevers occurred on a daily basis, he always woke in the morning with a normal temperature. Temperatures ranged from 100.4 to 103.9, though the high end only happened 3 or 4 times. Sometimes the type of thermometer makes a difference - I always used an ear thermometer. When he was diagnosed, the doctor said the fever was a symptom of Crohns. Looking back, I know my son complained of "bumps in his mouth" during this period of weird fevers. He had gone to the dentist for a periodic checkup during this time and the dentist dismissed the "bumps" as canker sores that would resolve on their own. When the ped. GI did the endoscopy, she saw lesions on the esophagus, but the biopsy on the esophagus was negative for Crohn's. The only other thing I can add is that prior to his diagnosis, there was some speculation about JIA as the possible cause of his fevers. I hope your son's fevers and mouth sores are resolved soon.

 

[Brian'sMom]

This week, still fevers and canker sores... So back to Mayo it is, and another round of Colonoscopy and MRE. And we'll be talking about new meds that are out there. We leave Sunday. Oh joyous times of Crohns....BLAH!!

 

[Sascot]

Good luck, hope you get a good plan sorted to ge him feeling better

 

[xmdmom]

I would have a hard time ascribing a ESR of 50 to a virus. Hope it gets sorted out quickly and he is feeling better soon!

 

[AZMOM]

Kathy.......

 

[kimmidwife]

Sorry to hear. Hopefully you get a plan in place quickly.