Crohn's Disease Forum » Parents of Kids with IBD » Recurrent fevers with children who have crohn's


10-01-2012, 12:11 PM   #1
EthanClark
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Recurrent fevers with children who have crohn's

Hello All,
I am new to this forum so I will give a brief history before I ask my main queston. I am a female 32 years old with 4 children. I was diagnosed with Crohn's disease in 2009 but had symptoms from the age of 16. My 2 1/2 year old son got very sick in FEB of this year 2012. We thought it was the flu because he had fevers, vomitting and diahrrea. After months of these symptoms, weight loss, very pale skin, lethargy, mutliple doctor visits, tests, antibiotics and a referral to a GI specialist they found he had a campylobacter infection. After treatment with correct antibiotics in May he had fevers start back up again and had them daily for the next month. He had a upper EGD and colonoscopy. Some ulcers and gastritis, possible Crohn's. He was admitted into the hospital after seeing an immune deficiency doctor and Rhuematologist with no diagnosis. He had alot of blood work and a CT scan and was monitored for his daily fevers while in the hospital. He was also seen by infectious disease doctors while int he hospital to try and figure out what was going on with him. No real conclusion other that possible crohn's disese. He was put on steriod taper for 2 months. He seemed to do better with energy and increased appetite while on steroid. Since being off of them his fevers have started again, stomach pain and lethargy has set back in. Here is my question? Do any of your children with Crohn's have recurrent fevers about every few weeks? When the fevers are happening his symptoms get alot worse. I have never had the high recurrent fevers with my Crohn's but understand that every persons disease differs a little. I just feel that maybe he doesn't have this disease and they are missing something. My son is now 3 years old. Any help would be greatly appreciated.
Thank you
10-01-2012, 12:37 PM   #2
Clash
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One of my son's symptoms of things starting to flare is nighttime fevers along with mouth ulcers, fatigue and lethargy. Before he was diagnosed the fevers would show up every few weeks and was the original reason we went to PCP. Once on the loading doses of medication, Remicade, the fevers and other symptoms including GI issues were gone. When he finished his loading doses and 5 weeks into the 8 weeks stretch until next infusion the fevers, mouth ulcers and other symptoms started back up so we are still adjusting his dosing schedule to find the optimal treatment period.

There are sure to be more members drop by to give great advice and experience. I hope you are able to get to the bottom of your son's problems soon and he finds some relief.
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10-01-2012, 12:47 PM   #3
kiny
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Fevers are a result of an immune response against bacteria, the cytokine like TNF and IL-6 can upregulate or downregulate body temperature by sending signals, it's very common for people with crohn, I had it all the time, if the fever is extreme you'll get night sweats too, it's the body trying to regulate temperature. No one is saying crohn isn't an infection btw, crohn to me is just a general name for every type of inflammation that is to date not readily explained. It could very well be an infection together with a genetic predisposition of a weak immune sysytem.

Crohn's disease does not rule out pathogens or infection, in fact it supports it since all clinical symptoms point to one, the other explanation for crohn is that it's an uncontrolled T cell to your own gut flora, which has no data to support it atm, at least I don't know of any immune response against commensal, it's usually against saccharomyces, against OmpC (invasive E coli cell wall) or against MAP, what can happen I believe is that there's an immune response against commensal when the mucus layer is temporarely breached, but this should subside once the mucus layer is repaired, they have never proven that in humans it would cause a non-stop reaction (one study showed this could happen in rats, but nothing points to this happening in humans).

I think you will have a hard time finding the opposite, people who have crohn who DIDN'T have fevers or night sweats. Night sweats are not single events, they're in response to a prior or current fever from the body to take control of the body temperature, it's a form of regulator, just like sweating when you're hot.
10-01-2012, 12:57 PM   #4
izzi'smom
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Izz used to get low grade fevers while symptomatic...I was told this is normal
and welcome to the forum! I am sorry you had to find your way here but it is a wealth of fantastic people and wonderful info.
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10-01-2012, 01:09 PM   #5
NMMom
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Hi there. Sorry about your dx and your little ones symptoms. My daughter has had more days than not with a low grade fever - usually about 99.5-100.5. This all began quite sometime before her dx and so far she still runs fevers far too often as she's not in remission. My thoughts are with you!
10-01-2012, 01:11 PM   #6
Farmwife
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So sorry to hear about your boy.
My three year old runs low grade fevers (99.5-100.5) when she's ill and sometimes when she's not. No meds will bring it back to normal. The doctor said maybe that's her normal temp to which my reply was then should I call when she has a lowered temp of 97.5????
Her temp can also run low.
I like you, I'm just trying to figure out what's wrong with her.
Grace has stomach problems also.
Her full story link is at the bottom of my post in green writing.

Does your boy have problems with his bowel movements? Any blood showing up in them?
Have you been told about EN? American Doctors are less likely to do that which is a shame.
Please feel free to pm anytime.
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10-01-2012, 01:17 PM   #7
Farmwife
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Also Suzysu has a young boy (2yrs).
She's asleep by now. Lives in Ireland.
I'm sure she'll be along tomorrow.
I think Freddy had fevers. She'll let us know.
10-01-2012, 01:19 PM   #8
Tesscorm
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Hi, sorry to hear about your little boy Hope you can get some definitive answers soon!

My son also had fevers, night sweats, canker sores, diarrhea before being diagnosed. And, these symptoms did come and go for a few months although, as time went on, they came more frequently and lasted longer, with shorter 'good' times in between. Having the disease present this way, on and off, may not happen to ALL but I think it is fairly common.

As was mentioned above, please do look at EN. It has no side effects, has a comparable success rate at inducing remission as steroids and has tons of BENEFICIAL side effects (nutrition, etc.) Here are two links - one to the EN section of the Treatment forum and one to a thread called Kids on EN.

http://www.crohnsforum.com/forumdisplay.php?f=161
http://www.crohnsforum.com/showthread.php?t=36345

Good luck!!
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10-01-2012, 01:35 PM   #9
EthanClark
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Thank you to all the responses. This is really an amazing place to get advice. I should have tried it sooner for my own issues with Crohn's. My son Clark's symptoms started with severe diarhhea that then went to constipation. I was told he had post infection gastropareasis after his long campylobacter infection. He went 12 days without a bowel movement before his colonoscopy. He now has a BM at nights when we put a diaper on him to sleep. He is potty trained throughout the day but is afraid to poo because of pain in the last few months. He has had blood in his stool periodically as well. Is anyone else's child very pale? Clark is just barley anemic so that doesn't seem to explain the severe paleness. Before he got sick his skin color was normal. Both my husband and I have olive skin so to have him change color so drastically was bothersome. Multiple doctors asked about his skin color while he was in the hospital but no one could give us an answer as to why it happened.
10-01-2012, 01:42 PM   #10
Farmwife
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YES, YES, YES!

Grace is pale, pale, pale.

The picture of her here is pale but she's lost more color now. Still hasn't come bet yet.
Do you know what his IgA is at? Lo, normal or high? My Grace has it low and I have been reading a lot about it and how it plays a role in diseases?
10-01-2012, 01:51 PM   #11
EthanClark
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I cannot remember what his levels were but I just requested all his test results from his stay in the hospital so I should know soon. Thank you so much for your relpy. I am getting alot if answers here from kids who seem to have the same symptoms.
10-01-2012, 01:54 PM   #12
Tesscorm
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My son was also pale, normally very fair skinned but was much paler when sick. Also had dark circles under his eyes. Other symptoms for my son included weight loss, fatigue (would come home and sleep most days after school), loss of appetite, back pain (many others also have joint pains), smelly BMs, he didn't have pain but felt uncomfortable movement in his abdomen.

There are other EIMs (extra intestinal manifestations), such as eye infections, but I just can't think of them now... I've also read here that, often, the EIMs can appear before the GI symptoms.
10-01-2012, 02:06 PM   #13
NMMom
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Ditto the skin color reply from Tesscorm. My daughter is also on the fair side but she was so pale and almost grayish when she was diagnosed. Plus the dark circles. Gone were the rosy cheeks and pink lips. I don't know if this was related or not but her skin also became very very dry regardless of lotion.
10-01-2012, 02:22 PM   #14
Clash
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C was also as Tesscorm described, although he isn't necessarily fair skinned. Around time of dx he was extremely pale(although only slightly anemic) and eventually had really dark circles under his eyes.
10-01-2012, 03:54 PM   #15
DustyKat
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Hi EthanClark and

I'm so sorry to hear of your little boy and what he is going through, bless him.

Being undiagnosed is such a difficult and heartbreaking time no matter what the disease. In my own experience I have found this disease to be a complete and utter enigma. I have two children with Crohn's, their diseases mirrors each other exactly and yet their presentations were so very different. One tending to classic the other nothing like what you would expect and so went undiagnosed for 18 months.

My son had recurrent fevers. At his worst, with inflammatory markers and a WCC through the roof, he had no temperature but once he was considered 'stable' and on treatment he would frequently have days where you knew he was far from his best and lo and behold he would have a temp. I must say at this point that he did have complications and we were waiting for things to settle down before surgery, so a period of about 3 months.

As to being pale, well if I had a dollar for every doctor that looked at my son and said...is he always that pale...I reckon I could retire! Seriously though, he is fair skinned to start with but no word of a lie he was as white as the sheets. It was the one thing I clearly remember hearing over and over again in the six months from diagnosis to surgery.

Do you keep a journal to help track symptoms? If not have a look at the suggestions we have in the wiki...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Have them check his blood levels for B12, folate and Iron stores. There are other ways of being anaemic that won't necessarily show on a standard haemoglobin, if that is all they are testing.

Good luck hun and welcome aboard!

Dusty. xxx
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10-01-2012, 04:33 PM   #16
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Sorry to hear about your little boy, it must be hard to try explain to him why he has to have all these tests at that age. I never thought anything of it before joining this forum, but my son always seemed to feel really hot inside - he would complain of feeling hot, but didn't always feel hot to touch. Hard to tell if he is pale as he is a typical Scot - pale!! He does get dark circles under his eyes. Hope your little boy feels better soon.
10-01-2012, 07:57 PM   #17
AZMOM
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Claire too had fevers.....diarrhea, mouth sores, occasional vomiting and finally bloody stools. She was also very pale with purple circles under her eyes.

Saying a prayer for your little one......

Did the colonoscopy biopsies not show anything?

Julie
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10-01-2012, 08:10 PM   #18
EthanClark
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They showed ulcers and gastritis. Biopsy neg for celiacs disease. I think the Dr.s were hesitant to DX with crohn's because of his young age. With his fevers they wanted to rule out everything else. I have tried the regular crohn's drugs in the past but have stopped taking them all and am trying to treat naturally. After prednisone my son is taking probiotics and fish oil. The doctors wanted stronger meds but are willing to wait and see as the DX isn't 100%
10-01-2012, 08:49 PM   #19
my little penguin
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have they looked at Periodic fever disorder??
http://www.rheumatology.org/practice...ions/pfapa.asp
http://www.ohsu.edu/ohsuedu/academic...-Syndromes.pdf


http://emedicine.medscape.com/articl...54-overview#a1

IT can also cause everything you talked about and is much more common in younger children.
It can even inflame the gut.
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10-01-2012, 11:55 PM   #20
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So sorry about your son's illness and your dx also. I hope things improve soon.

YES on the pale skin!! My son is fair anyway, but when in a flare he is white, closer to gray with dark circles. Two possibilities here: malabsorption because they don't really process what they eat. Also, I read somewhere that skin is very much like intestinal lining in its makeup so it is affected when they are flaring. This would make total sense because my son's skin gets thin and his hands get very dry and they crack and bleed. He is better now and his skin has returned to normal. I give him a biotin supplement in addition to his other vitamins, probiotics, and fish oil.
10-02-2012, 12:01 AM   #21
izzi'smom
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Ditto to dd being pale/dark circles while symptomatic.
I'm fairly certain your state will be full of GI's shortly-ours is attending a conference there in a few weeks.
Hoping you get some solid answers soon...we also did probiotics and fish oil but I didn't notice anty significant improvement so we stopped. Every case is so differrent...hope it works for you!!
10-02-2012, 09:39 AM   #22
EthanClark
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My little penguin, Thank you for the links on Periodic fevers. I first heard about this from this website and left a message with my doctor yesterday to see if that was one of the many tests Clark had done while in the hospital. It sounds like alot of the symptoms are the same. I appreciate all the insight I am getting from all of you wonderful parents. This honestly has been the hardest thing I have ever gone through. Nothing is worse than watching your child's once happy self turn into someone that is so sick and miserable. My heart goes out to all of you.
10-02-2012, 01:49 PM   #23
Devynnsmom
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My 11 year old daughter has had fevers on and off for years. When she first started seeing her GI they also sent her to reum and she was tested for Mediteranian Periodic Fever Syndrom. She is very pale! She also gets dark circles under her eyes, or really red circles when she's not well. She has mouth ulcers, joint pain, her bm's can go from diarrheah to constipation or vice versa, abdominal pains/cramps, she has had all the skin peel off the bottoms of her feet, or the palms of her hands. We are in a one month trial of eliminating milk. I don't know if its making a difference.
Good luck, I hope you get some answers really soon (((hugs)))
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